Autoimmune urticaria anyone?

Looking to make friends with others who have autoimmune urticaria and share stories, symptoms, food for thought, etc. Anyone game?

[Dr_Aparna]

Hi,
In the overwhelming majority of cases it is not "something" causing the chronic hives, it is "nothing." That is, in about 95% of chronic hives cases, the hives are "idiopathic" (a medical term that means there is no discernible cause).
In about half of patients with chronic idiopathic hives, the explanation is that body's immune system is, in a sense, overactive. The urticaria is "autoimmune". The immune system is attacking the normal tissues of the body and causing hives as a result.
So, in many patients with chronic hives, there is really no exposure (drug, food, insect, chemical) to blame for the urticaria. The patient must understand and accept this for their ideal management. Basically, all that needs to be done is treat the hives. The main treatment of hives is antihistamines, and they will work if they are used properly.
The most well tolerated initial treatment is the non-sedating antihistamine Claritin. Zyrtec is similar but may sometimes cause sedation. If that doesn't eliminate the hives, a sedating-type of antihistamine (hydroxyzine, cyproheptadine or doxepin) is added at night. High doses may be needed and this will cause sedation. Fortunately, most patients will become less affected by sedation after they have taken the drug regularly for a while.
A new treatment has recently emerged for autoimmune urticaria. This is the use of Plaquenil, a drug originally used for malaria. In a recent trial 83% improved or cleared completely when used for three months or more.
ref:http://www.aocd.org/skin/dermatologic_diseases/urticaria.html
Hope you are better informed about your condition and find it useful.

[jbaum27]

Yes, I have had autoimmune urticaria for ten years. At first the only medication that would help was Doxepin. I was on that for seven years and finally got a sensitivity to it and it was no longer effective. With autoimmune urticaria vs. chronic idiopathic urticaria (which they said was what i had for eight of the ten years) I couldn't use antihistimines at all with effect, doxepin was the only one!
Plaquenil is our next option. However using synthroid (synthetic thyroid) daily has done more for my hives than anything used thus far. I have found very few people who continually have hives such as myself and I am searching for a support group more than anything. I have studied urticaria these whole ten years and I am now well versed. It helps to have a RN in the family :)

[meatpuppet]

You're not alone J - I've had CIU on and off for the last five  years. I have Hasimoto's thyroiditis, but during my FIRST bout w/ hives about 3 years ago, NOT ONE doctor (out of the 5 that I'd seen) made the connection between autoimmune thyroid trouble and hives. Thanks to this board, and Dr. Apama, I am better informed.

As I said, I've been hive-free for three years, until last week. My allergist said I should take a Zyrtec at night and an Allegra in the morning. Thus far, they've done little, if anything at all, to mitigate my symptoms. This time around it seems like I'm getting more angioedema (disfiguring facial swelling) reactions as well; for the last two days, I've woken up w/ swelling in either my lips or eyes or both.

So, understandably, I'm a little concerned. I'm a teacher, and going in front of the class looking like the boogey man isn't going to work out too well.

Currently, I'm on .200 mcg of Levothyroxine (generic Synthroid). I'm wondering if this should be boosted, as I've read elsewhere that people have responded positively to increased thyroid meds. I'll be consulting w/ an Endocrinologist next week, so hopefully he can give more insight.

I know the last entry here was in June, but if you read this, hang in there! I'll bookmark this page and keep ya posted :)

[Leannrae]

Count me in....I need to be able to connect with SOMEONE who understands what i am going through.  I also have vitiligo and experience depigmentation of areas which are attacked most harshly by my hives.  I am currently crawling out of my skin.  It hasnt been this bad since I was pregnant with my son.  I just started some amoxicillan for strep throat and am wondering if I am not having an extra dose of urticaria as a reaction to the medication.  I have never had drug allergies in the past, but havent been on high doses of antibiotics sense I have developed CIU.

I am currently uninsured.  As SOON as I do get medical insurance I am going to an immunologist/allergist to make sure its not some strange allergy and try to get on the immunosuppressant drugs to help the hives....at this point I HAVE to.  Nothing like urticaria to drive a woman crazy.

hi, nice to meet you btw ;)
Leann

[LAURA4676]

I am new to this site but have had autoimmune urticaria for over nine years. It has been a long nine years as I'm sure you know. I have taken prednisone now for those nine years and it is really starting to affect my life, my body is becoming immune to the prednisone so I have seen a lot of the hospital lately for solumedrol. I have taken all the antirejection meds or autoimmune suppressants and so many others. I feel like a guinea pig because nobody knows what to do with me. I have seen all the specialists even the cleveland clinic and university hospital groups. I saw a dermatological surgeon yesterday and she is going to start me on a drug called cytoxan (a chemotherapy drug) and plaquenil ( an old drug used to treat malaria) pretty aggressive but I have exhausted all of my avenues, and being a nurse myself I know what to watch for, Do you have any suggestions or anything that works for you? Do you get hives all over your body and do you get them everyday? I hope to hear from you soon your friend-Laura

[truelove47]

I am 62 and have had this condition since the age of 17.

I take zertec to relieve the itching'

Mine is caused by exertion. heat, or emotions                   Linda

[poluzepo]

Hi,
I just tested positive for autoimmune urticara. They said that the test was low, so they need to take more tests to determine if I really do have it. For a few weeks now I have woken up with hives on my legs, arms, stomach, and so on. I've tried zyrtec and claritin and neither has really helped. Xyzal seems to work the best. The keep putting me on prednisone, because it is the only thing that will make the hives go away.....I am younger then most of you as I am in middle school......it is so frustrating because I am missing so much school.....any advice???

[Mauigirl808]

Hi- just came accross this site and blog, and count me in as well.  My hives started 2 weeks before my wedding, which was almost 6 months ago.  Everyone (except me) assumed it was stress and dismissed me.  It wasn't until I was fully loaded with steroids, and 6 days into the honeymoon covered head (literally the scalp) to toe in those awful, painful red monsters you all seem to know so well, that anyone started to take the symptoms more seriously.
I've tried all the meds( and I'll be damned if that prednisone didn't packmon 20# in 5 weeks! which I still can't lose), seen the dermatologist, allergist, immunoligist, endocrinologist, chiropractor, intuitive kineaseologist ,a naturopath,  two acupunturist/chinese medicaine doctors- all with no insurance of course; and the hives persist.  It seems I'm in the auto-immune urticaria group.  Currently Xyzal and Zantac combined at off label dosing is working pretty well, some wheels every day, but manageable.
I guess my family and I just really had our hopes up that there would be a tangible cause and a resolution treatment.  From reading some of the other blogs, it seems I may have to expect maintenance at best??
Is this right?  I may need to be on these meds indefinitely?
I just can't help feeling defeated by that- as though it's just a band-aid, when I guess I was hoping there was a cure, or something I could do differently to fix it on my own.
I did figure out the link between my face swelling up like a balloon and my taking Ibuprofen - which prior to the hives I used all the time.  No more for me unless I am standing in for JarJar Binks!
Anyway- thanks to you all for your stories.
And to Poluzepu- I can't even imagine having this at your age!  I know how embarrassing it can be!  My co-workers daughter is your age, and seems to be following in this path too.  Maybe I should tell her about this site.  Hang in there.  Eventually the symptoms will be controlled and you'll be back with your friends as though it never happened.
mauigirl808

[mfalco]

I am a 37 year old mom of three that has had symptoms of autoimmune uticaria for 8 years now.  I have seen every kind of specialist in the Orlando area and just recently made a trip to Bringham & Women's Harvard medical center in Boston for some answers.  I finally met with a knowledgeable doctor name Dr. Sloan and he is discussing putting me on a anti rejection drug call CSA.  My hematologist is not crazy about this idea because of my young age and the long term affects of suppressing your immune system.  He suggests I meet with Dr. Kapplan in SC who lectures on this method of treating AU...have any of you been to see him?  I am constantly trying to figure out what sets off my hives but, there just seems to be no rhyme or reason to it.  Like most of you, I was daignosed with hoshimotos after my first child and am currently on synthroid, zyrtec and santac combo in the evening which has definitely helped with the severity of the breakouts but, hasn't emilinated them.  I plan to see Dr. Kapplan in the next few weeks so, will post what I find but, please add any information you may think will help.  Most frustrating thing ever!!!

[KateHives]

I have had hives for about 9 months now.  Nothing has worked so far, Zyrtec, Xantac, Allegra, Zyzal, Clarinex, Sulfasalazine, and Atarax.  I am such high doses now, the pharmacist wouldn't fill my prescription because he thought it was a mistake.  My hives continue to get worse, covering my face, neck, back, chest, stomach, legs, arms, hands and feet.  I also get Angioedema which means my eyes and lips swell up like I've been stung by a bee.  I also get this in my fingers and the bottoms of my feet.  Doctor wants to put me on Plaquenil and if that doesn't work Cyclosporin to suppress my immune system. I am coping but some days are pretty dark.  I'm starting to become very tired.  I think my body is just getting beaten down.  Sometimes in the morning I get the chills and my body aches like I have the flu.  Usually if I sleep a few more hours that helps.  It's getting hard to work.  Luckily I can stay at home a lot of the time, but I know it's effecting the way people think of me.  I think most think "hives" is a silly made up thing, but for the last nine months it has been hell.

[TheRash]

I have been dealing with my last bout of hives for about a year and a half. For the last year I have been on Cyclosporine, Methotrexate and Doxepin. The combination worked and for about a month I was totally hive free. Once I went off of the drugs though, they are back in full force. I am so tired of my life being controlled by a RASH! I know I will probably have to go back on drugs, but for now, I am trying to live without them, because I really don't want to take so many strong drugs. I take Zyrtec for allergies, but it does absolutely nothing for the hives. Anyone who is still trying to deal with this with over the counter drugs is wasting their time. You need to find a specialist who knows what they are doing and who can monitor you closely. I was very lucky to find a great doctor, it is worth the time to research and find one. Good luck everyone, we are not alone!!

[Lisaj422]

I have an 18 year old daughter who started her hives in Oct. 09 after taking penicillin for a strep throat and they have never gone away. She has been diagnosed with Autoimmune chronic uticaria at a high level. She has seen dermatologists, allergists/immunologist and we keep trying all the meds mentioned above. She is a senior in high school and missing a lot of school when she gets the Angioedema with the hives. I am glad to see this blog and will show it to my daughter. She is very frustrated and depressed over this.

[KateHives]

Has anyone noticed their hives are worse during or after their period?  This is a pattern I have noticed ... I keep wondering if it is possible to treat with hormone regulation?  Just a thought.  Also Predizone worked for me temporarily, but I gained about 30 pounds so in the end it was not worth it.

[TheRash]

Kate, I have noticed the same thing but am not sure if messing with my hormones would hurt or help. I have autoimmune hives and have noticed that even though I have no food allergies, I am now sensitive to foods that I wasn't before. Chocolate will set hives off, as will other candy, (maybe sugar) and always alcohol. Sometimes it is worth having a drink anyway and deal with the hives later. ;) Right now I have to decide whether to try to get rid of the hives again, or just learn to live with them. I see my specialist tomorrow, I think I already know his opinion. I don't like either option, I just want them to go away on their own!!! Not gonna happen though.

[Lisaj422]

I am so glad to read your entries today. My daughter got her period the other day and her hives have gone crazy. Not even benadryl is working which has been her savior in helping the itching some. Do both of you get hives everyday like my daughter? Some days are worse than others and the places alway vary, the other day her legs were bad and yesterday they were on her trunk and arms.  I feel so bad for all of you, this has been so dibilitating for my Lindsay and being a senior in HS this is suppose to be a great time for her.

Lisa

[TheRash]

Lisa, I can't imagine dealing with this in high school!! I am in my 40's and never had a hive ever until about 5 years ago. Yes, they happen every day, yes they itch, and yes they are worse during your period. Benadryl helps a tiny bit, I use the topical gel (slather in it) if I need to, but find Zyrtec more affective. I used to take Claritin, but it is not as strong. Sometimes ice or a cold cloth helps, and I'm getting pretty good at mind over matter.
I started on drugs again today, Cyclosporine and a short bout of Prednisone to jumpstart the process. Doc said it would be a REALLY bad idea to just try to deal with them as they could get significantly worse than they were before. The drugs did work for me, and the hives did go away, so I guess I will listen to him and take them like a good girl.
If your daughter has not been to an allergist or better yet, a specialist she needs to get to one soon. My allergist had no idea what to do with me, and sent me higher up the food chain to someone who does. High school is hard enough without this burden on her, good luck!

[Lisaj422]

Yes she is seeing an Allergist/Immunologist in Boston. She has put her on a few "cocktails of meds".  Right now she is on predisone every other day and Zytrec in the morning and at night and Rantidine 2x a day. Some days are better than others. I am taking her to a holistic nutritionist tomorrow in hopes that a change in diet will help. I will let you know if it works. I guess she will be put on a special diet for one week.

[KateHives]

I get my hives every day too.  They seem to move up and down my body, but a lot of the time they are just everywhere.  Sometimes they are so large I get a bruise.  Right now they are on my face so I am working from home.  The itching can drive you crazy, cause sleep deprivation, etc.  taking a warm bath and using a lotion with tea tree oil helps me most days, but when they are really bad, I like a hot shower because it's almost like scratching if you get the water hot enough.   I can't imagine dealing with this in high school.  I will say a prayer for your daughter and hope you guys can figure this out quickly.

[Hivy]

I have very relieved to have found this community.  I have been dealing with hives and angio-edema for the past years and was diagnosed with Hashimoto's in March 2009.  I had never heard of auto-immune urticaria prior to last March and most of the information I have gotten has been from the internet.  I take Claritin twice a day and Hydroxcine at night and Prednisone when I am feeling desperate.  (I have gained at least 10lbs in the past years.)  I did have some remission from September 2009 to January 2010.  After my period in January, the hives have returned everyday.  Thanks for reading my rants.

[Lisaj422]

I took my 18 year old daughter who suffers from Chronic Hives since Oct.2009 to a holistic nutritionist yesterday. It was interesting and informative. She spent about 1 hour with her going over her history and doing a bunch of different "tests" on her. We left with some calcium and enzyme pills for her to take one every hour that she awake to try to clean out her liver and build up her calcium.  For $147.00 I figure we'll give it a try. She also wants her to avoid milk products, corn products (which is in everything) and gluten for the next two weeks to see if she emproves.  I will keep you posted.

[TheRash]

Lisa, I am curious to hear what calcium has to do with hives, I take it anyway just because it's good for you,couldn't hurt to try extra for hives . I thought of acupuncture, but was worried I would have a hive on every needle spot. For me, the Cyclosporine is working well and I have had very few hives since I have been back on it. Could just be the Predisone, but I am off of that tomorrow, so we'll see! Hopefully she won't starve too much on her everything free diet. ;)

[hivedout]

Im a 27 year old female from Arkansas. My first break out started my freshman year of college in 2000 and I've been suffering on and odd since then. I have been to doctors in Arkansas,Texas, and Oklahoma. Still have not found a cure nor a cause. Monday was the first time I've broken out in two years, so I guess they are back. I'm so tired of this and I wish there was a cure. Its good to know their is someone else out there like me. My feet hurt and my hands hurt from swelling.

[Lisaj422]

Update on my daughter Lindsay.
She was put on a restricted diet - no whites, wheat, dairy, corn
Within 2 days she was hive free. We started testing the waters some and gave her some milk and she was fine. She took a bite of a cookie and felt itchy within 15 minutes, so no more of those. She got a salad with croutons and had a breakout. It seems anything with flour makes her break out. She has lost some weight and her hands and feet are no longer swelled or hurt, since she is only eating salads and proteins, baked potato are fine as well.  She feels 100% better. I think it's worth a try.  Good luck to all of you.
Lisa

[TheRash]

Great news on your daughter! I'm sure diet is a big factor in all of this. I am also curious if she cut out sugar. It seems to be one of the things that gets me the quickest. (candy) I'm still eating it though, because it tastes so good!! I think it would be really hard for me to restrict my diet, although I am getting closer to that decision. I basically live on coffee and carbs with a yogurt thrown in. White bread is my close and personal friend. ;) It would take a serious commitment on my part to do it. However, being hive free in two days is pretty motivating!! Good luck to her continued hive free success!!

[Lisaj422]

She has not cut out sugar - aren't you happy. She puts tons of sugar on her cheerios each morning. She is a sugar freak just like her Mom. She is slowly going back to her old ways which I am trying to keep her motivated. I think the Zyrtec twice a day is a big factor because if she misses a couple of days a few hives appear. She is not losing as much weight as we had hope with the change in diet.  I think you should try for maybe two days and see if you notice a difference and if not go right back to enjoying food as I do.  Good luck :) Lisa

[PEGALLERGY1]

My daughter (15) began having sever hives in "Aug. 09" sending us to the er 3 times. Doctors had no clue. The only thing I gave her was Aleve (2 er visits) Tylenol (3rd visit) she could take prior no problems. 4th visit for concussion said take Motrin almost had 5th visit started with hives, new the drill Benadryl, Pepcid, Allegra thankfully she only took one dose. Looked up the ingredients of all three to find a common ingredient. Found polyethylene glycol (Miralax) and PEGs.  She had suffered with impacted stool and took this for 3 months in "05" and when needed. She had a fever of 104 for 4 days "Aug 09" after that the problems began. I have been reading a lot of labels this stuff is in EVERYTHING! It is in most pharmaceuticals including oral (liquid, tablet, powder) injectable & topical. Yes it's in food muffin mix, cake mix. Toothpaste, cosmetics, body wash, shampoo etc... To all that suffer keep a diary to help you put the clues together. My daughter was chewing on a straw and her tongue swelled and was itchy, Deodorant red & itchy, shampoo sores on scalp and hair falls out, ate a muffin itchy tongue. Mild bumps on face gets better with antihistamine. Had a Compound Pharmacy make Motrin without the PEG and she had no problem taking it. We have to be the detectives and figure it out! Good luck to all (:

[ruzalily]

My son has autoimmune urticaria, diagnosed at age 2.  He gets hives near the end of an upper respiratory infection (a cold, cough, or sinus infection).  Does anyone find that a virus triggers their hives, too?  

[Lisaj422]

My daughter's hives started when she had a really bad cold and strep throat.

[KateHives]

After being on Plaquenil for about 8 weeks I'm happy to say my hives seem to be under control.  I still need to take 2 allegra everyday, but the hives are gone and I feel human again.  Hope everyone else finds what they are looking for too.

[hatinhives]

My hives and angioedema started when I was 10. They lasted a few weeks and went away. They have returned every 8-10 years lasting longer each time. I am 40 now and this episode began in June of 2009.  I have been on several rounds of prednisone as well as daily Allegra, Claritin, Zantac 2x daily, and Doxepin 125mg at night and 50mg in the morning.  I was hive free for about @ weeks while on high doses of prednisone but hives returned when weaning off of prednisone. I also have gained 45 lbs. in since June due to prednisone. I have started Plaquenil about 3 weeks ago and am hoping things will get better after being on it for a while. They say it takes couple months to help. Along with the hives I have angioedema in my face, hands and feet. Sometimes I can't find any shoes to fit except crocs or something like that. I was diagnosed with chronic autoimmune urticaria in January.  

[TheRash]

Hello hatinhives,

Good luck with your treatment. Prednisone works wonders, but does too much damage, so I won't take it. I have had my last bout of hives for about a year and a half now. Plaquenil did help, but really messed up my  digestion and I think I gained more weight with that than the Predisone. I have found Hydroxizine very helpful and am also on Cylcosproine. I have tried Doxepin which was good for hives, but put me in a mental fog as it is an anti depressant. For me, the Hydroxezine has the fewest side affects. I seem to get them all. I have also been on Methotrexate which is very much like the Cyclosporine, both lower your immune system. I am going back on the Methotrexate soon to see if I can get rid of the hives instead of just managing them. Right now they are under control, but always there.

[itchy100]

i have to dealing w/ hives for 5 yrs or more--to date i have not been diagnosed but my breakouts are so similiar to the symtoms (symptoms) many of you have explained.  hives seem to appear w/ no reason and can mass quickly all over my body.  my last severe attack was after i took a zyrtek d at 10AM and by the time i got home from work and whole body was one large hive and i had a fainting spell.  i dont know if the fainting feeling was related to the hives but i was scared. my mother and her two sisters have auto immune diseases.  i wonder if my hives are a form of an auto immune condition.  i also have asthma and allergies.  does anyone have a helpful suggestion?  i am so tried of the hives and dealing with them everyday!!

[Evernae]

I am a 27 year-old woman and I have had chronic autoimmune hives for about 3-4 years now. Like others, the first incident was a reaction of hives & angiodema to ibuprofin, which I had been taking for years. Now, I get them all the time, for no reason. I've been on hydroxizine, xyzal, fexofenidine, doxepin, claritan, ranitidine, and of course, the dreaded prednisone.  I have found that all anti-histhamines so far have little to no effect.  I get hives when I work-out or sweat, when I swim, when a cold wind hits me, during my period, when I'm sick, and sometimes for no reason at all. The only drug that seems to be effective is prednisone, which makes me fat and jittery.  I feel like a fluffy pillow or a marshmallow when I take prednisone.  The hives are itchy and uncomfortable and I am so tired of having people point out red blotches on my neck, face, arms, etc.  I've learned that in addition to being diagnosed with autoimmune hives, I have also developed an allergy to all pain medication except for tylenol.  My immunologist says that autoimmune urticaria is often triggered by an initial allergic reaction to something such as ibuprofin.  Now my immune system overreacts to everything.  Has anyone tried the immune-system suppressing treatment?  I would love to be able to live hive-free.

[TheRash]

yes! You have to treat your immune system, not just the hives. That is why nothing is working. The easiest way I explain it to people is that for me, a chronic sinus infection went in and turned on the switch for hives in my brain, but when it did, it broke the switch, so the only way to turn them off is to find the fuse box and flip the switch there. Fuse box, being your immune system, finding it, being immune supressing drugs. You have to lower your immune system enough for the hives to turn themselves off. Otherwise they are just going, and going, and going.........
I am on both Cyclosporine and Methotrexate (with folic acid) which are both meant to lower my immune system. With them I am about 80%+ hive free. Without them, I am covered. Foods make some difference, and alcohol definitely causes them, but they can't be controlled with just antihistamines. I also take Zyrtec and Hydroxizine. It's a lot of drugs, but I can't function with my body covered in a rash.
Good luck! Treat the cause, not the symtom.

[loveroids]

Im a 38 year old mother of 3. I had my first symptom in oct. 09. It started simple enough with the bottoms of my feet and palms itching like I had poison ivey. Little did I know at the time that was just the beginning. within a week my lips and eyes would swell (looking like a total freak). THEN THE HIVES STARTED! Everyday I was covered from the neck down. I was prescribed everything that has been mentioned and a few more , at one time I took 26 pills a day. Going from 1 protonix a day to 26 different meds was scary. None helped not even the predizone, I thought the specialist I was seeing was a quack. He then prescribed medrol which Iloved ,it cleared me up but that was a temporary fix. Afer my 3rd round af the steroid (medrol) he said the side effects were to harmful we have to find something else. This is all a guessing game, I have been really afraid it has to be something underlying they just couldnt find my body was attacking. At least I would have an answer. I went to Vanderbelt in Nashville a week ago to another specialist ( internal medicine/immunologist) with pretty much the same answers( my immune system is over reacting to something). They did alot more text, i should get back in a couple more days. In this day an age the thought of having to live with something this debillating is not an option. I looked so horrid in Nashville at the end of the visit they did i v steroids and sent me home with another round and alot more prescriptions. I feel for everyone of you that is living with the unbearable itch,wheals, and swelling. We will find an answer, we have to. I cant imagine those of you living with this for so many years or in school trying to just live normally. Good luck to you all . You will be in my prayers. Anyone not going through this doesnt understand even the (so called) specialist act so sympathetic but I really dont think could ever understand. So many people have asked questions like have you switched your detergent like its that simple!

[luckyae]

I am 29 and have had hives for 10 1/2 years. They started when I got malaria and haven't gone aways since. My hives are a little different than most, they are painful, not itchy and many of them bruise. After the first couple of years, they got to be a little under control and I usually have 1-5 a day on random parts of my body. The last couple of weeks have gotten out of control again and they are everywhere. This is extremely frustrating because I haven't changed anything. The weirdest part about it is that when I was pregnant with each of my 2 children, I didn't have hives during my entire pregnancy. I am going to the doctor about it next week for the first time in over 5 years, maybe they have come up with something during that time that can help.

[Hivesallover]

I first had hives 21 years when I was in the Marine Corps. It was bad enough that I had to take 200mg of Benadryl EVERY 4 hours around the clock or the hives would attack viciously to the point it was painful to move. I had a big bottle of the pills with me 24/7, even out in the field on missions!! They went away after 10 months, poof gone. They came back in January of this year and have gotten to the point that an allergist did her tests on my back and they came back all negative, then bloodwork and determined that I have autoimmune urticaria from a serum in my blood. Yaay for me, not! Right now I'm on my 3rd dose of prednisone(4 a day x 3 days , 2 a day x 4 days) and taking hydroxizine at night and zyrtec and plaquenil in the morning. Without the prednisone it seems as though the meds are non-existent. I have had several noticable bouts of the angiodema that made me look like something out of a Star Wars bar scene. I get these damn things from my feet to my head and they not only itch but they burn and it feels like my skin isn't mine. This is driving me crazy. I feel as though my life isn't mine to live anymore but instead is being controlled by the hives. With everything I'm on as of this moment I am 99% clear of hives, but as soon as the prednisone course is done again I am concerned they will return. We'll see I suppose. Know that you're not alone and many Dr.'s and other people are working world-wide to find us help for this curse! God bless you all and help us get through this.
Semper Fi

[mamakap]

has anyone else had experience with AICU and pregnancy?  I am 3-weeks PP and all of my AICU symptoms vanished COMPLETELY while I was pregnant.  NO flares, no hives, no swelling.  

Two days after delivery of my son, I had severe flare-ups in my palms and fingers (where I am most commonly effected).

I had my first flare in Decemeber of 2007 and life has been hell ever since.  I tested positive for AICU with the CU index test in March of 2008.

I do have Hashimotos and take 100mg of Synthroid daily (notice someone mentioned a link between AICU/CU and Thyroid conditions above).  I've made this correlation though none of my doctors seem to have information about it.

Ive seen allergists, immunologists, endos, primary cares and no-one can offer my any hope :(

Im only 26 and have a three week old and am FEARING my next flare.

[cher531]

I am a 47 year old famale..    I am so glad I found this site.  I have not been officially diagnosed either, but I have been on thyroid meds for over 8 years.  I also was diagnosed with Granulomer Annulare, an auto immune diesease last year after I had a cyst remvoed. I have been experiencing all the hives everyone has been talking about for six years .. swelling of the face, eyes, even ear lobes.. large bruising hives that move all through my body.. and they are painful and itch..   Once I get a trigger, such as carpet clearner, or something I got from an ankle surgery.. the hives stay stong for weeks attacking different parts of my body. I am on zyrtec, allegra, singular, etc.. and I take them everyday.  at one point I was on prednisone for over a year.   I have seen 5 allergy/ENT/Derm doctors.. wtih no help on this.. and my thyroid doctor wants nothing to do with believing that my hives are related to autoimmune or thyroid issues...
I KNOW they are.  

[TheRash]

Get a different doctor (again). There is a simple test your doctor can do that will tell them if you have allergies, or if it is autoimmune disease. You are tested with your own blood platelets.
This is such a frustrating problem, and if you don't have the support of your own doctor it's even worse.
My first doctor (allergy) told me my hives had grown way out of his league, and sent me to a specialist that he trusted. Best thing he ever did for me. I am literally on 10 times the drugs that he would have ever tried because he was afraid to use them. I have to get my blood tested every month to make sure I'm not hurting any body parts, but so far so good, and my hives are under my control instead of me under theirs.
Good luck!

[Dhiva]

OMG!  I was just diagnosed this week.  Seems like this has been going on forever, but many of you have me way beat.  It is so reassuring to know that I am not alone with this, nobody around me seems to really understand.  Just reading the entries here has answered several of my questions.  Thanks.
Diana

[Hivesallover]

  My newly assigned allergist got my blood-work results back and with exception of 2 areas everything was normal.The 2 areas not good were the CU Index and the CRP. These 2 areas are for chronic urticaria and swelling in the arteries. My pain management doctor changed my dosage of narcotic for my back and knee that are both messed up fairly bad. Turns out that the meds I am on release histamine!! My allergist requested that I be put on a different med and it too causes the release of histamine. I now seem to have a choice of pains. I can either have these #$^&ing hives or I can just be in pain with out them. Hmmmm, looks like I'm not going to be taking my pain meds anymore and then i should be hive free. I can find a way to work around my physical pain easier than the hives I'm having. Good luck to you all and I hope that if this information helps but one of you then my time was not wasted.
Semper Fi

[Carol88888]

Wow, after all thes years, I can't believe I finally found other people with this long lasting problem.  I've had them since Thanksgiving 1999.  They started out as giant hives, and I was on prednisone for almost three months.  A dermatologist replaced the Pred. with a combination of Zantac and Zyrtec.  They haven't been "giant" since then.  I have found that a very low carb diet keeps them somewhat in check, although, it's very difficult to stay on that diet, because even too much fruit brings them on.  The Zyrtec seems to increase my problems with constipation, so I keep trying different things to try and solve the urticaria, so I can get off the drugs.  I have also researched it for the whole 10 years.  I learned it was autoimmune for me when a doctor, in 2002, ran a zillion tests and found that my blood complements were involved.  I have been diagnosed with other autoimmune diseases as well, so I guess the urticaria fits right in.
Carol

[YouTellMe09]

Hi J,

For the past 8 months I have been suffering from urticaria. I would break out in hives day in and day out and was never sure of the cause. After a while I thought it may have been due to food allergies. During Xmas 2009 I splurged and the hives were chronic yet again! My fault for that, so I ended up seeing my GP in Jan 2010 and he gave me a referral to an immunologist (which I ended up having to wait 5 months to see!). Once I eventually saw the immunologist, he tested me for allergies and the results were all negative. So after that he diagnosed me with chronic urticaria or autoimmune urticaria due to food intolerance (salicylates). I sought the advice of a dietitian not long after and she stated that urticaria can be the result of trauma in ones life. I started a 6 week elimination diet and began to feel a whole lot better. The 6 weeks are now up and I was told to start reintroducing gradually some foods and drinks again, however I have noticed some small hives reappearing. I now know that my triggers are beer, wine, chocolate, citrus fruits, tomatoes, avocados, protein supplements, caffeine, heat (from physical exercise or physical environment) and stress etc. I just wish this would go away on its own accord!

[MegaMunstr]

My name is Megan and I'm 30 years old with one 2 year old daughter.  I have posted about her just recently, but wanted to post about my current situation to see if anyone had some ideas.  When I was in high school I noticed that I had white little patches on my hands.  I wasn't sure what they were at the time.  I found out when I was about 24 that it was vitiligo.  It has spread over the years and has taken control of much of my skin.  In 2005 I accidently locked myself out of our house and had to wait for 3 hours until my husband came home to let me in.  I was currently attening an online program for radiation therapy and was very loaded down with school work.  So, I'm guessing I was pretty stressed at the time.  Well, the next morning after that I noticed two or three red itchy dots on my arm.  I thought they were mosquito bites.  However, they kept popping up every where.  One morning I woke up and my eyes and lips were swollen.  One of my friends had had hives before and told me that they looked like that.  I went to an allergist early 2006 and was diagnosed with idopathic chronic uticaria.  In July of 2006 I had a major gallbladder attack and had to have my gallbladder removed.  The hives continued.  I went to a dermatologist later in 2006 and he ran some lab work.  My thyroid antibodies were thru the roof.  TSH was normal.  I was then diagnosed with Hasimoto's Thyroiditis.  I continued to have hives on a daily basis and many of the days angioedema was present.  In 2007 I visited a rheumatologist who did tons of labs.  My C-Reative Protein was high.  My ANA was positive 1:160 with a speckled pattern.  I tested positive for EBV.  All other lab was fine.  The only time I had relief from my hives was when I was pregnant with my daughter.  So far, it has been 5 years with hives.  I have them right now.  When i get flare ups they are almost impossible to live with.  My daughter now has an appointment next week with a ped. rheum. because she has been c/o right knee pain and her ANA was positive 1:160 speckled and SED rate was high.  

I also have been to Mayo for this and the only thing they found was huge amounts of beta prostaglandins in my urine.  I have also since been tested for autoimmune uticaria and that was positive.

[ertivasc04]

I have had urticaria vasculitis for 5 years now.  It started towards the end of winter and lasted a couple of months.  The following winter, it was back, but lasted much longer.  The next year, it just never went away.  My hives are 24/7 from the top of my head to my feet.  2 years ago, I moved to SLC, UT and found the very best dermatologist in Utah who is very knowledgable with urticaria.  We have tried several different medications, but I would either have severe reactions to the medications, or they simply didn't work.  Due to some of the medications, I gained 40 pounds, which on top of the severe hives, caused me to be very depressed, so I decided to try HCG to help with the weight gain.  Incredibly, within 1 week of taking the HCG injections, my hives disappeared!!!  However, the prescription is expenseive and my insurance won't cover it because there is no research for HCG and hives.  I have tried to stop taking the injections due to the cost, but within 2-3 days of not taking it, the hives return in full force.  

I hate to see anyone suffer like I do, but it is good to know that I'm not alone.  This seems like a great support group and I'm so glad I found this site.

As for you who have posted that you have found your hives seem to flare up more around your periods, I just finished watching a show in tv about a woman who started getting hives on her eyelids, and it eventually worsened to cover her body and she would go into anaphylaxic shock.  She and her husband started tracking her outbreaks and found that her severe outbreaks would happen around her period and also when she was ovulating.  She went to her gynocologist and after performing a patch test, she was diagnosed with autoimmune progesterone dermititis.  She got a complete hysterectomy and within a week, all of her symptoms were completely gone.  This may be something for you to discuss with your gynocologists.

[mamakap]

hi - your story sounds very much like mine - from hashimotos to complete remission during pregnancy.

Obviously, there is a HUGE autoimmune component to this hence the hashimotos (autoimmune hypothyroidism) and the remission during pregnancy... your autoimmune system slows down during pregnancy to avoid issues with the fetus.

:)  Just know you arent alone!  I am struggling to come up with some sort of answer.  Currently (as I type) my hands are insanely consumed by hives and angioedema.  This is not a disorder I would wish on my worst enemy.

[TheRash]

It's a relief and a bummer to know that there are lots of us out there. I also don't wish this on anyone, but am glad I am not alone. The food triggers are close to the same for me, though I have never been officially tested. Any alcohol is bad news, very sadly so is chocolate or any candy in excess, tomatoes, extra carbs, pizza, the air I breathe.........most of the time, I just eat it anyway and know that I may be more broken out later except for the alcohol because I can't have that with my meds anyway. Sometimes chocolate is worth it. ;)
The most annoying hives I get are from pressure. If I carry a heavy purse I have a ring around my arm. Tight belt makes an innertube on my waist. (not a fun place to itch at all) carry a heavy box and my arms will show where it rested. Grocery bags or shopping bags always leave a mark that usually lasts the rest of the day. I have learned now how to carry things without touching much, how to dress without looking like I'm wearing a pillow case and who to hand off the bags to. Coping skills are my new best friend. Word to the wise, DO NOT go get your eyebrows waxed (or anywhere else) unless you have a few days to deal with it. Not pretty. Good Luck!

[twoinoven2003]

I notice your hives went away during pregnancy. I have recently made the connection with monthly hives that I've had on my thighs for over ten years. They would come a few days before my period and disappear a few days into it. Well, over the past six months they have gotten worse and worse. First extremely itchy palms and soles of feet, gradually to hives covering my hands, feet and arms (big ugly lumpy ones!). Now this past week they covered my body, and my period is over and I still have them. I did some research and discovered Autoimmune Progesterone Dermatitis. I think this sounds like what I've got. I read that it goes away during pregnancy. What confuses me is that I'm 45 and thought I was having perimenopause, but read that when your periods stop so does the APD. Now I'm confused as to what's going on with me. I have a physical tomorrow and will get results of bloodwork done a few days ago when I went to Urgent care where I got prednisone. Seems to help but can't sleep well on it. Benadryl keeping the itching under control when I can stand the drowsiness with it (ha can't sleep with one, can't function with the other). The hives nearly go away at night but start fresh in the morning, mostly on forearms and thighs. My heart goes out to all of you suffering with hives. It *****! I will post with my doctor's findings. I am printing out info on APD and taking it in since it's not well known, even in the medical community.

[mamakap]

google - Janet Long - Mystery Diagnosis.  I was watching this show last week and her story of an unexplained illness was highlighted.  Turns out, it was Autoimmune Angioedema (which I picked up on almost immediately - since I have this also).

Also, if any of you are not familier with Angioedema, take a look at this organization's website.  Sometimes chronic hives can be a SYMPTOM of angioedema (HUGS)

www.haea.org

[layth12]

I am so glad I found this site. I have been suffering for 2 months now and its driving me crazy. It actually started last year, I got hives for a week or so and then disappeared. 2 months ago I got the same exact hives in similar places, I thought they would go away in a week like last year..but no this time its lasting a lot longer. My doctor gave me zyrtec and prednisone

[RichRoberts]

Hello all,
I've had Hives and Angeodema since Feb this year. It has recently been diagnosed as Autoimmune disease. I had the test where they take out some of your blood and reinject the serum compared to a control and it flared up immediately. More tests are ongoing including biopsy but the dermatologist was pretty confident in the provisonal diagnosis.

I have a quesiton for you all out there.

In May I had a big flare up, got very sick with a ferver and chills and ended up being admitted to hospital for 7 nights. My CRP was well over 100.  Eventaully they controlled the rash with IV Piriton and IV Cortizone. They sent me home with oral piriton and oral predisone which I took for a couple of weeks. When I tapered off the predisone the rash came back.

The quesiton is:-
* Has anybody else got sick with fever and chills caused by the rash? (my doctors dont know if the rash was cause or effect of the illness)
* Does anybody else suffer from the chills in combinationwith the rash? (Whenever am in a slightly cold environment I feel extremley cold and get covered in goose bumps - on top of the rash!) I cant find any record of anybody on the web having experienced chills with urticaria.

Any input very welcome.
Thanks - Rich (In the U.K)

[TheRash]

Sorry Rich, I have never had a fever or chills with my hives. I have had sinus infections and colds which make your immune system go wacko and I go into super hive mode. With your body attacking whatever is making you sick, the hives are on go crazy mode. Takes me a few weeks to get things back to "normal". You might want to get your thyroid checked, just a  thought with the temperature thing. Good luck!

[ryguy111]

Hi Everyone.

I have been suffering with this for one year now and feel your pain.
Been through it all- every antihistimine known to man ( at crazy doses) and Doxepin.

Currently doing Prednisone ( again) as it seems to be the only thing that adds refief. I can deal with the side effects okay .
My doc has now added alprazolam to the mix as this " depressant" calms the skin and don't think that I am overly drowsy on it.
My next move is to get off all this and she is going to move me to Plaquenil- probably in the next couple weeks. Immunosupressants seem to be the only thing that does the trick. My hives are auto immune and also have "delayed pressurre" hives so can't have any force on my skin what so ever.
My hives all started 2 days after I got the H1N1 Vaccine- seems it has put my immune system in turbo drive and now it is attacking itself.
It is truly horrible and if there is any advice I can give or support feel free to contact me. I appreciate how hard this is for everyone.

[daddonizio]

I have been diagnosed with Auto-Immune Chronic Urticaria through a blood test at an allergist.  It began after I was taking digestive enzymes from the health food store for 2 months prior to control my symptoms of GERD.  I have a strong oral allergy to pineapple, and although there is no way to be certain, I believe that ingesting capsules w/ bromelain every day for 2 months was the root cause of my hives.  I am now reacting to a large list of fruits, vegetables & herbs that I would normally never react to.  This is ironic bec/ these are the "healthy" foods I would usually eat to help my body.  The hives are itchiest at night and when I eat the wrong thing my lips will swell up also.  I have had cortisone shots and know that they are only temporary, if they work at all.  I take antihistamines at night so I can sleep, but I try to take the lowest dosage possible and I experiment with going off of them on weekends (when I don't have work the next morning) so that I don't become dependent on them.  Along with the dermatologist & the allergist, I have done some energy medicine sessions and intend to see an acupuncturist, as I believe in a holistic approach involving both eastern & western medicine.  My personal strategy has become eating at home whenever possible so that I can see every ingredient that goes into my food, avoiding alcohol, and drinking lots of water to flush out my system.  I have also considered that my system's acidity may be out of balance especially in view of my GERD (PH strips say I'm too alkaline) & that my hormones may be involved bec/ the hives seemed to flare up worse around my period and also bec/ I had terrible eczema in college and know that it was directly related to birth control pills.  This seems like such an individual problem - just like an allergy, one person may react badly to something while the same thing is perfectly fine for everyone else.  Whatever the cause, it's certainly no fun & I feel for everyone with this issue.  Best of luck to all in finding your cure!    

[orogenicman]

associated with severe allergies nearly all of my life (I am 51 years old).  The two medications that I have found that help are actifed and hydroxyzine.  I can no longer take actifed because I have a heart condition.  Hydroxyzine has been the most effective for me, and I have found that if I take it at night, it helps me sleep, and I feel much better the next day.  As long as I stay on it regularly I do ok.  

I also have exzema (eczema) on my back and right ankle, seborhia(?) on my scalp, as well as interstitial cystitis, which is also autoimmune and involves the mast cells in my bladder (and I believe it is related to my uticaria, but you can't tell the doctors that). I take elmiron for that and have to restrict my diet to control it.  Since I have some food allergies, that further restricts my diet.

Right now I am havng a pretty bad bout of utircaria because I am disabled and am out of my medication.  I spend so much on medication because of my heart condition, the allergies, and my bladder problem, that I have problems making my food budget last to the end of the month.  Hopefully that will cange when I get accepted on medicare part D.  I'm waiting for the mailman to give me some good news on that so that my monthly prescription bill will be lower.

At last but not least, it is good to know that I am not alone.  That said, I wouldn't wish it on anyone.  I've struggled with it all my life.

[Hivessuck]

I am a 42 year old female and have my own disastrous story.  Long story short, they thought I had scabies and the treatment completely burnt my skin from head to toe. After Prednisone and and an anti-psychotic drug to stop me from scratching until I bled, I was left with constant hives that are now mainly on my hands that are slowly are crawling up my arms. I have done the all the doctors, allergist, dermatologists (2 of them!) Not too many of you have mentioned going on autoimmune suppressants - drugs they give to transplant patients.  I was on Cellcept but due to the cost had to switch to Myfortic.  I absolutely hate being on this but it seems to be the only thing that stops the hives.  Three months after being on this drug I went to a naturopath who found I was "sensitive" to gluten, milk, soy, MSG. I got off all bad foods and skin completely cleared up.  Soooo, I got off the Cellcept (gradually) thinking that I had found the sudden cause for the hives and whamoo, the rash came back.  Right now I am back on the Myfortic and still on the strict diet, trying to figure out what to do next. If any of you know what NAET's is, I am in the process of doing this as well. I have done eggs, chicken and chicken feathers and my naturopath tested my birth control which I had a sensitivity to, so I just completed NAET's for that. Basically, it is a natural way to become "not allergic" to something.  Too soon for any concrete results. I will keep you posted

[vee26]

Boy am I glad to find you all, I thought I was going mad. I have had this for almost 4 years now. About to start Auto immune suppressants once my referral goes through. I seem to be passed from pillar to post as no one understands it and Drs feel its some sort of party trick i can just perform, comments like "you look ok" "ok show me it working". I have even been checked for drug and alcohol abuse and eating disorders not to mention the "is something going on at home" routine. Its been a horrible time and I have never found others that suffer from it until now. I also have low iron without anemia, Drs say its not possible for my levels to be so low without anemia so I wondered if there is a connection but the latest specialist says not. My iron stores are now being used up slowly, I don't respond to any iron tablets even on extremely high doses, iron infusions were suggested but I am asthmatic and with this Urticaria I am high risk of anaphylactic shock, so my GP is dead against it. I also have excessive hair loss in patches, can't even drive with the air vents on as half of me ends up in the back seat, even my hairdresser has started charging me half price. Seriously, though its horrible to live with and Im terrified at the prospect of the next step as I will be vulnerable to illnesses and being a teacher I am in close contact with all sorts of illnesses. Those of you who have started autoimmune drugs, is it as bad as im told or are there any plusses to it as Im in a dilemma as to how to proceed. Thanks to all

[cal_gal]

I am so thankful to have found this group.  Although I’m sure I’m not alone when I say I wish we were meeting under different circumstances!

I also suffer from Hashimoto’s autoimmune.  It took years (YEARS) to diagnose.  After reading the posts above I have a new appreciation for my allergist/immunologist.   In April I developed hives.  Knowing my history with Hashimoto’s my doctor immediately tested me and confirmed that I have developed Autoimmune Urticaria.  

Since then I have tried a variety of drugs.   First was Doxepin which as someone else mentioned cleared the hives but knocked me out.  I couldn’t keep a thought straight in my head to save my life.  Not great since I run my own business!  Over the last four months my doctor has continued to fine tune my meds.  In addition to my thyroid meds (synthroid and cytomel) I am now on Allegra, Zantac, Plaquenil, Xyzal and my second round of Prednisone.  I hate being on all these drugs but given the choice of drugs of hives I’ll stick with the drugs.  This is especially true since I now also get painful welts that leave bruising.  The hives/welts come and go with no rhyme or reason some days on my arms, other days on my legs or waist, and yet other days swelling my eyes and lips.  Yuck.  I’ve been trying to figure out if there are food triggers but so far the only triggers I’m sure of is when I am emotional or if I’m stressed.  The good news is that the hives/welts are coming less frequently and when they do I’ve noticed that even though they are still ugly they don’t have the same itch intensity.  

My doctor tells me that Autoimmune Urticaria can disappear as quickly as it came with no apparent reason.  Although that’s the scenario I am hoping for he also tells me I should plan on fighting this over the long haul.  Because of this I really appreciate all of your stories, ideas and suggestions.  Although I found other websites that told me the definition and treatment for this disease it’s so much more helpful to hear from others that are dealing with the same issues.

Best of luck to all of you.  I hope that we can find solutions for this some day!

Gail

[hjie]

I could have wrote your post. I have been to so many dr's! No one can figure out what is wrong with me. I woke up with hives on April 11th 2010 I have never in my life had hives or have been allergic to anything. It took me until July 3rd 2010 to DX myself. If I don't eat gluten or casein (protein found in milk) I don't have bad hive breakouts. I had hives from head to toe, tried everything under the sun and nothing worked! I researched and reasearched and started reading other people's blogs about their living with hives and what they have tried. I went off the Gluten and Casein and guess what. Hives were gone! I could think clearer, my attitude got really calm, as I was experiencing so much anxiety and now I take a zyrtec maybe 1 time a week for a minor patch of hives and they go away in about 20 minutes. If I eat gluten or casein I break out in about 15 minutes and need to take a zyrtec, which clears it right up. I was tested for celiac's via blood test, well I found out if your not eating it then you won't test positive. I was told there were other ways to test for it and I am not interested in those ways I just won't eat it! It works for me! I eat fresh veggies, fruit, fresh meat, potatoes, brown rice, and som blue corn. Water and unsweet green tea thats it! I also have hypothroiditis and am on synthroid. Lisa I could totally relate to your post, so I just had to tell my story. I appologize in advanced for my grammer! I'm short on time right now!! Jenny

[HiveyGuy]

I have had hives for urticaria/hives/angioedma for past three years....doctors cannot explain (five have weighed in so far).  I have been on prednisone, Allegra, Singular and Zantac.  Caffiene can sometimes make the hives worse to I cut that out.  However, since starting the Atkins Diet (low-carbs)....the hives have diminished tremendously.  If you search the inter-net, you will find other who actually developed hives by adhering to a low-carb diet.  I am here to say the exact opposit happened for me.  I would suggest to everyone with hive issues to give it a try....restrict your carb intake for at least two weeks and see what happens....what have you got to lose?

HiveyGuy, Missouri

[hivesq4yrs]

Hi all. I have been suffering from these evil red devils since I was 15 (I'm 28 now). Myhives seem to have a cycle. They come every 4 yrs and last about a yr. At first they come a few at a time and go away with benadryl. Then they increase in number and how long they stay daily until one morning I wake up and am covered. Instead of looking like I have hives it gets to the point that it actually looks like I'm red and puffy with a few small areas of normal skin. They are from scalp to toes and do not go away.They itch terribly and nothing seems to help the itch for more than 10 min at a time. I've been on allegra zyrtec claratin  zantac benadryl chloratabs and prednisone. Tapering prednisone works for first few days but then the hives are back. Ive tried anti itch creams like topical benadryl Calagel and sarna. my most recent bout started about two months ago. I have been tested for allergies and tried looking for food triggers. I also have juvenile diabetes since age 7 and was tested fit an allergy to my insulin...all were negative. Dr finally said probably autoimmune. I also get angioedema in my face eyes lips hands fingers and feet. Before my very first episode I had never had hives or swelling in my life. However since that even when the hives are not present I occasionally have swelling of my hands and fingers. this round the doctor has opted for dapsone. The first two weeks it seemed to help but now I'm covered swollen and miserable from the itching that is constant. My allergist increased my dapsone thursday but nothing has changed with the hives. does anyone know of this is a medication that takes a while to see an effect? This is literally impairing my life as I have an 8 yr old son and feel like im too itchy to function. Not to mention I'm in my last quarter of nursing school and have no idea how I'm going to be in the hospital 36hrs a week when I need to keep applying stinky sarna cream every half hour. I read where someone else gets a fever and chills. I also get chills and although I have never had a fever I can feel the heat radiating from my body when I'm covered in hives. I don't necessarily need an answer to the cause just some way to manage these things and definitely something that helps the itching. The only relief I got in the past was with a former dr in california who put me on prednisone daily. My dr in ohio now will not prescribe prednisone due to the side effects. At this point I really don't care about side effects I just need relief from the constant itching that even keeps me awake at night. I'm normally a very happy joking person but every time I battle these hives I get extremely down in the dumps. This time I actually feel like I may reach my breaking point and go crazy because of the intense itching and pain from swelling. Im not one to cry or complain usually but I just feel like siting at home and crying as I repeatedly itch my entire body. I will try anything to help the itch. Any ideas??
Thanks and best of luck to all. I feel for each and every one of you.
hivesq4yr

[AbundantLife]

I want to know if anyone here has had it trigger anaphylectic shock? Until February, for the 8 months prior, I was going into AS every evening...and for no reason. I was later diagnosed with chronic autoimmune urticaria by my allergist and a blood test. However, I don't have insurance, and I went off a couple of my maintenance meds until payday...and where I've been having some swelling (my jaw popped out recently, etc.) and saw the chiropractor after which I feel like I had the flu...but yet felt better...I now feel better. I have some seasonal rhinitis right now, but I had that before I screwed with my meds. My life is less stressful than it was...so I'm wondering if perhaps it's gone into remission again, and the meds were too much. But as I said, the Singulair in addition to Zyrtec and Pepcid was the only thing keeping me from going into shock for awhile. I only get a couple hives....as I start going into shock. My skin is pretty sensitive and my inner organs start spazzing with the shock too. I almost died for AS in high school...and the allergists then couldn't figure out what was wrong.

[TheRash]

Luckily, I've never had anything as scary as AS happen. I have been through that with my daughter, and that was enough!
My doctor explained, that with Autoimmune urticaria, ANY cold or flu or stuffy nose will intensify the hives and set them off. Once your immune system is working to get rid of what ever bad thing is in you, the hives can't tell the difference and they keep attacking too. They just don't know when to stop. If I get a cold, I increase my meds for a week or two and then go back to normal to try to counter attack the hives.
For the last few months I have been doing great on my "cocktail" of pills and am VERY slowly working my way off of them. I don't have any side affects with Cylosporine or Methotrexate (immune supressing) and actually like the Hydroxizine because I sleep better with it anyway. I started at 60mg of Hydroxizine and am down to 20mg. I have allergies also, so I am staying on the zyrtec because my nose plugs up completely if I don't.
AS is a pretty scary thing, so I would be really careful about what you are on and what you aren't and keep in close touch with your doctor. Your insurance situation is all the more reason we need a good health care system!!

[Kaylex5]

Has anyone suffered chest pain - heartburn with hives as this is what I have had for past 3 weeks - ended up hospital face swollen badly - docs said hives not connected to the chest pain yet I get it with the hives?? Greetings from England my doctors think I'm jus an akward nuisance !!!! Joy

[HivesNewOrleans]

So glad to know I'm not ALONE!! Began breaking out with hives Oct 2004 and they were a permenant fixture until sometime in 2008. Well my old friends decided they wanted to visit again beginning in April of this year. I have been on many of the meds mentioned by others with relief only from the Predinsone. Gained over 30 pounds (which refuse to go away) and some bone lost in my knee from the prolong use of the predinsone. I wake up in the middle of the night having what I call an all out "scratchfest". Legs, arms, stomach, back, face, and everywhere in between are covered with hives. I've never been prescribed any of the immune supressing meds but wrote down the names to mull over with my Dr. on next visit. It's such a wonder to find a site such as this, althought we are all going through a VERY trying condtion, hearing some of your stories and advise give me a glimmer of hope for us. I pray EVERY night for my hives to dissipate and I will do the same for all of you guys.

[bluehalo]

I had CIU 10 years ago. I was happily leading life when all of sudden, I relapsed into chronic urticaria back in March. Its been 6 months trying to search for solution. Back then from 1996 to 2000 I had chronic urticaria, I tried everything at that time but to no avail. Only thing which worked was zyrtec 10 mg/Zantc 150 mg twice a day. Out of blue somewhere in 2000, the urticaria disappeared. Amazing!. Now I am again stuck with it. Due to web, it is much easier to search and find useful anecdotal experiences of urticaria cures. I new exactly that zyrtec/zantec will keep it almost in control but not eradicate it. Also I got more sensitive to food. I was vegan by birth. I found that if I eat meat I get less hives. It seems if i eat regular food (which has wheat) I get hives. I might try the wheat/milk elimination diet as some tried but I am not sure it will help. Currently I am trying  a holistc approach where I take (tukmaria seeds and gum katira - 1 tsp each mixed at night in 1 glass of water). I take this first thing i morning I wake up BEFORE anything else as suggested by someone who got cured of CIU taking this. I am taking this for 4 months now but it is not stopping hives. The person who got cured by this thinks it is due to damp heat trapped in skin. My analytical/logical mind also tells me to try Ketotifen 1mg twice daily (Mast cell stabilizer + antihistamine properties). I am taking ketotifen (Zaditen is the brand name - I get this drug from UK) for past 2 months. I intend to continue it until I see result.
I am also practicing reduced breathing (kind of buteynko method) wherein you reduce the amount of air you breath and try to perfect that kind of breathing. When I wake in morning, right way I practice breathing for 30 minutes. Recently for the first time in 6 months during past 2 weeks I saw reduced hives. I was not strict on diet past few days and hives came back again. I need to be more disciplned!.
I started singular 10mg today to bar leukotrenes from causing delayed effect hives (hives coming after 10 hours or so).Lets see if this also helps. So currenly I am taking Zaditen 1mg/150 mg Zantec twice daily and perhaps will continue 10mg singular for next 2 weeks.
I will keep everybody posted

[cchives]

I am a 33 year old woman and I was just diagnosed with AICU about 4 weeks ago. I had 2 trips to the hospital with anaphylactic shock before they referred me to a specialist. My condition seems to go straight from hives to my throat closing up and I can't breathe. When I was 8 years old I was diagnosed with Cold Uticaria that stopped by the time I was 13. I didn't have much of an issue with that because as long as I avoided cold I didn't have any reactions.  I have been on Prednisone now for about a month, my Dr. is tyring me out on Atarax, Ranitidine and Doxepin. I now carry a Epi-pen on me at all times due to the severity of my reactions. Is there anyone on here who has severe reactions like this?

[RooSTL]

Hi There.. I am 45 and was diagnosed with chronic Autoimmune urticaria about 10 months ago.  It started out of the blue in 2008 covering over 80 of my body (really attractive.. not).   I went through a number of dermatologists and a variety of drugs (Incl Steriods) which did nothing before I found my current Doc who is awesome!...  I am now on a relatively large does of Cyclosporin, but have blood tests each months to ensure the levels are right.  The hives are under control while I am on the meds, but come back by noon if I forget to take them in the morning.  My advice to anyone is to find the right doctor and get on medication asap... my Doc said most people he sees have unsuccessfully been through a large number of Doc before they find someone who can diagnose it and start treatment.

Good luck all!!!

[chniha]

HI all. I'm a 27 year old teacher. I started randomly suffering from hives in April. At first, I thought I was attacked by a pack of wild mosquitoes, then I checked my bed for bedbugs, then I thought I was having a reaction to a new medication. Finally, I was sent to an (expensive) allergist. I had an allergy test and they told me that I am basically allergic to everything, but most especially peanuts, egg whites, grass, melon, turkey and beef (i know. who's allergic to meat? I've been living off pork!). My doctor prescribed tagamet with all the other medicines I'm taking (zyrtec, singulair, symbicourt, hydroxyzine as needed, currently off the prednisone bc it's weakening my bones). It's supposed to have good long term effects. Other than at night, I've been virtually hive-free since my allergy test in July when they gave me a Benadryl shot. However, I've had a cold since Friday and I have been watching the hives get steadily worse since then. They usually only spot on my arms at night, but they've been increasing in number and location (legs, chest, backs of hands), showing up by mid-afternoon and showed up as large wheels (sp?). I know they told me a lot about my immune system basically being on override, so my guess is that my body can't fight off a cold while also fighting off hives, so it picks its battles. I guess they will be gone by morning. I'm glad the zyrtec and hydroxyzine help me sleep!
Basically, I just wanted to suggest you all try tagemet. You can get it OTC, it's cheap, and you can look it up- it's used for hives because it blocks histamine. Ask your doctor about it. Mine wrote me an RX so I can get 30 pills for $10.

[airframe89]

I have had AIU for about 4.5 years. I have tried many medications and combinations of medications. I have had the best response with Sulfasalazine combined with Allegra. I have been using it for about 2.5 years with no obvious side effects. 1.5 months ago I decided to see if there were any new drugs on the market for AIU. I have been using XYZAL for 5 weeks. It has worked increasingly better as it has ramped up in my system. I have had several side effects that have made me decide to go back to the Sulfasalazine. They are weight gain, not sleeping and feeling like in a daze all day.
I am a 39yr old Male

[BeccasHives]

I'm 35 and have had sporadic hive breakouts since I was 12.  At 16, I contracted Type 1 diabetes, at 22 I lost my thyroid. 3 years ago I found out I had nose polyps which may be auto-immune related also.  My hives were quite aggravated in my younger years and found that my forearms would flare up during volleyball and my thighs broke out during basketball.  I noticed that when areas of my skin were cold (i.e. hands/feet) and I warmed up too quickly (hot shower), I would break out in the skin areas that started cold.  They have come and gone ever since and no doctor I brought it up with could explain it.  I am also not known to be allergic to any foods or meds.  In August of this year, I had an early miscarriage and now I am breaking out in hives in my trunk area and thighs every morning between 5:00 - 6:30am.  They have come back with a vengance!

For the last couple years I have been on a daily dose of anti-histimine after I developed nose palyps, and I have not had breakouts of hives until my recent miscarriage.  So, it is intresting to see those who experience hives around their periods or during/after pregnancy.  I've been worred my body attacked my baby.  My husband works in a hospital clinic in SLC, Utah and one of the doctors specializes in Cold Urticaria.  I am anxious to see if he can help, though I can't get in for another 40 days.  

Good luck to all of us!  Glad to have found people who understand this torment.

~Rebecca

[grash]

i m suffering from autoimmune CIU....... this disease is highly irritating..........  gulping down antihistaminics and antisuppresants also doesn't help

[margypops]

It does help to hear the stories of other people, heres mine, it comes and goes, mostly now around my neck/collar bone area , large hives with a white center on a pink back ground, it strats to prickle first and I try not to touch, itch, if I do it burns, stings I have been using an otc anti itch cream that has helped a bit...I take nothing else, for the last few years I havve run the gamut of Doctors and drugs...now I just use alternative meds if I use any ..I have done a lot of my own research and I thought I had Lyme Desease for a while now I dontr think I have ...heres what I think causes it...I am not a diabetic but on and off my sugar level is very unstable ...I have a flare of these hives right now as I write this,, I know I have had a higher sugar level the last few weeks, some summer parties, extra candy, desserts Carbs and Wine ...May I suggest that you all at sometime cut right back on anything sugary and see if it improves ...I am convinced that ,at least for me its that causing it, I also think I have a low thyroid , yes I have had tests and they found it was negative..but no I dont think they know what they are doing ....so I am my own advocate and Doctor ...

[kellypurdie]

I have been with this condition over 8 years. My hives change patterns when I have been pregnant. All I can tell you is that I take 1 to 2 (20ml) of Reactine this dose has to be prepare by the pharmacist. one time the pharmacist called my doctor questioning the 2 pills a day dose. However this is the only pill that makes them go away. I dont think is so much the sugar but the coloring on the candy or drinks. Caffeine and alcohol will make your Hives wost so will ibuprofen.

[rnpc]

The first time I had hives was at my sister's wedding.  I was having wine with a friend of mine who is a pediatrician, and she realized I was having hives and I took some benadryl and that was the end of that.
Almost a year later,  woke up with my left eye swollen and the next day the hives started and it has been 2 months now.  I have had hives every single day, some days worst than others, but it has been pretty bad.  The first allergist I saw diagnosed me with idiopathic hives and after taking claritin, zyrtec, benadryl and zantac on a daily basis, I saw no change.  I saw a second allergist and she is pretty sure that I have AIU.  
After reading what everyone had to say, I am on a very low carb diet now and that is helping me a lot.   I have cut down my meds in half.
I have a question for all of you.  I have a 1 year old who I am breastfeeding.  My allergist is fine with me nursing, but I have heard from others that you shouldn't nurse with autoimmune conditions.  Even though I have not been officially diagnosed, but given my family hx of autoimmune illness, I am sure this is what I have.
Also wondering if anyone has had episodes of complete remission and how long they last (minus during pregnancy).

Thank you all

[Kapattack]

I have to say, like a lot of the others, I'm so glad I found this group. I've been having hives for almost 3 years now, and despite a long lineage of severe autoimmune problems in my family, I was only just now tested. The hydroxizine works most of the time (I also take Xyzal on and off, but it's so  expensive) and seems to help with my insomnia problem. I saw that a lot of people say alcohol sets them off, but for me it's caffeine.

To answer mpc, yes, I've had periods of remission, but they usually only lasted a few months before I had to jump back onto the meds.

My question is, has anyone found any brand or kind of bath soaps that they find help? It's probably more of a placebo than anything, but at least it keeps me from scratching. The Aveeno oatmeal bath is ok, but I was wondering about others.

It's great to hear about pregnancy stories - I was getting concerned that they would get worse if I got pregnant. Now I'm hoping for the opposite.

[TheRash]

I use Dove or a very mild soap, but soap doesn't seem to have any effect on me anyway. The best topical help I get is from Benadryl gel. NOT store brand or anything else, just Benadryl.
As far as remision goes, my hives are 95% controlled with the drugs I'm on, I lasted 2 weeks when I went off of them a year ago until I was head to toe again. It has taken me a year to get back to the point where the drugs are very affective and I am now weaning off of them VERY slowly. I'm off of Hydroxyzine, although I miss the deep sleep, and am almost off of Methotrexate which is an immune surpressing drug. So far so good. I am still on Cyclosporine (max dose) and Zyrtec. I chose to stay on the Zyrtec because I also have sinus issues and can't stand my nose without it. I think I will be able to maintain  a healthy level with about a half of a dose of the Cyclosporine. That is my goal anyway. I am fairly convinced now, 4 years into this, that they are not going anywhere and neither are the drugs so as little as I can take the better.  Good luck!

[fvlmom]

my son is 10 years old and has bouts with hives since he was about 3.  For the past 6 months they haven't left and now has the angioedema as well.  Tests confirmed autoimmune urticaria  He has vitiligo and has EPP, an allergy to the sun.  One doc has prescibed periactin, zyrtec, colchicine and allegra, nothing there helped.  Went to see #2 doc who said he wants only allegra, axid and vospire and he would guarantee this not to return ..it may take 3 years...well #1 doc said his main goal was to stop the pain and itching and because its autoimmune we haven't a clue when the hives will be gone, or gone and come back.....any help or advice?

[TLMaine]

I have had AIU since I was 16. Unfortunately, I have been on many bouts of steriods over the years. I have gone 6-7 years without them, but since I have entered perimenopause-menopause they come every year. Interestingly enough I did not have them through my pregnancies (2). I have not heard about not nursing when you have a AI disease. I feel the benefits of nursing are so great that it is worth nursing. I have had some help from acupuncture-anyone else? I also finally found an allergist that doesn't want me to take steriods-instead Sulfasalazine. I am about to go on it-taking 5 antihistimines a day is terrible, especially when they don't work that well. I also have GI problems when I am having hives-anyone else experience that?

[CAUstinks]

Xolair is proven to work in several clinical studies for autoimmune urticaria.  I have had CAU for 17 years.  I participated in a study in 2007 for Xolair (Dr Kaplan).  It put my CAU in complete remission.
FYI Regarding Novartis' program for financial assistance, one is only eligible if you do NOT have insurance coverage.  I have health insurance, so their program was not able to help in my case.
What needs to happen is for Novartis/Genentech to forward the case studies to the FDA for approval!!!  I was told that this would be done after the study in which I participated was over.  It has not been submitted yet to the FDA!!!  When it is submitted, the FDA makes a decision within one year.  If they approve it, then the insurance companies can then in turn approve coverage for those of us with CAU.
Honestly, I don't know what in the world is holding up their submittal.
WARNING - I was on cyclosporine for 6 months in the year before the study.  When I came off of it, I was sick to my stomach every day for two years.  I now have three food intolerances, one of which is in EVERYTHING.  This medicine ruined my ability to process certain foods, and I now have to follow a very special, strict, and EXPENSIVE diet.  As if the CAU weren't enough!
Good luck

[Hiver]

I just found this thread awhile ago and thought it's time I post.  Yes, it's nice to see that there are others who can understand what I (we) have been, and are going through.  Here's my story.  I'm a 56 year old male.  It seems most here are female.  I've had hives for a little over 5 years.  I had them once before for a day or 2 when I was in college.  I fought them for a year before I started seeing a specialist.  Went through the usual battery of tests, blood draws, biopsy, etc., insisting that there must be something I was allergic to.  I finally accepted the diagnosis that I have Auto-Immune Chronic Urticaria .  I would get the hives daily, with only short periods of not having them.  I usually would have the big, giant welts but sometimes just the red dots.  Fortunately, they usually were beneath my clothes or under my hair line and didn't show...usually.   I would also have angioedema with swelling in my  face, lips, eyes and hands.  Usually it would be only on one side of my face but severe enough to swell an eye shut. It looked like someone beat me about the head with a bat.  My hands would feel like they were going to split sometimes. I work for the gov. and have a lot of daily contact with the public so it was difficult at times. I even looked into early retirement a few years ago as I couldn't function very well. It took a couple of years to get the meds adjusted but I'm currently on a 2x a day cocktail of drugs including prednisone every other day. Some of the dosages are high enough that the insurance company required confirmation from the doctor and the pharmacist would call to confirm the prescriptions were correct.  They're used to me now though.   I've been on the prednisone for over 2 years and it was the only thing that really seemed to keep the hives in check.  When they were really bad I would go on a high dose of prednisone and do the burst and taper back to my regular dosage after 3 weeks or so.  I know the prednisone isn't good for long term but I don't care.  It would give me relief and I could sleep, not scratch myself bloody and the swelling would go away.  The doctor was discussing other more aggressive options with me but I wasn't thrilled about some of the potential side effects.
A couple of years into this I started a daily journal of symptoms, possible causes, etc. and stopped after a year or so as I could find no rhyme nor reason to it all.  It just was.
Now, the good news:  I have been symptom free since around April.  I saw the specialist in September and we're slowly backing me off the prednisone and if that works will then start on the other drugs.  Until April, I was never without hives for more than 2 weeks and usually not for more than 2 days.  It has been such a relief after 5 years of hell.  I truly feel for the young folks afflicted with this and for all the others too.  I am enjoying the relief but every time I get a bug bite, an itch or a bump I wonder if it's the hives returning.  And, it keeps me wondering when they'll return.  I know 5 years isn't much to some of you but hang in there and hopefully they'll just disappear as mysertiously as they came.

[rnpc]

I just left the allergist office, and with more answers then I have had before.  My ANA came back positive, speckled 1:40.  Also I am positive on complement CH50.  Does anyone else have this?  I asked the doctor, but she really didn't have too much to say about this.

My immunocap results were all normal, but the allergist wanted to do skin testing and I am so glad that I did get it done.  It turns out that I have food allergies on top of the AUI.  I am allergic to corn, milk, peanuts, orange, celery, lemongrass and some other things that I am not normally exposed to.

Now she took me off the prednisone and started me on allegra x2/day.  Prednisone of course was working perfectly so I am not going to like being off of it, but she thinks I should be pretty good with the allegra.  We shall see.

I also have started having GI issues with the hives being present and also bruising at the site of the hives.  

I go back in 2 weeks to get results of ANA panel.  She wanted to get more details on ANA profile, but she said that hives are much worst to control when ANA is positive.  I am hoping for a false positive, but I am not getting my hopes up.

I am interested to know about this medication Xolair... HOpe it gets to the FDA fast

[Nikoelle]

Thank you for sharing your stories, it is helpful and encouraging!  

I have had chronic hives on and off for 5 years.  As I read about what others have tested for and experienced I can say I have AutoImmune Urticaria and Angioedema.  

It all started after/during a couple of months of intensive dental work(root canals and crowns).  I had severe swelling in the face and hives all over my body.  My body was so sore I could barely move.  My face was so swollen after the dentists visits.  This went on for about a few months, I took claritin which took things down a notch.  My dentist thought I was ridiculous for suggesting I could be reacting to the work being done on me!

I have had better experience seeing holistic doctors for easing my Irritable Bowel Syndrome, Hypothyroid, and Depression so I turned to one again.  I was put on an Anti-inflammatory Diet which I noticed immediate results but still had hives.  After about a year they eventually went away.  
  
When the hives were gone I went back to eating things like bread, corn, tomatoes, sweeteners, and occasionally drinking alcohol, and caffeine again.   I still had a pretty healthy life style.  But they returned again 9 months ago.

I have weened myself several times from anti-depressants and thyroid medication for over 10 years.  After reading some of your stories I can see there might be a correlation between what happen next.

So when the hives showed up again, I went back to a holistic doctor and she pulled me off my thyroid medicine, essential fatty acids, and my probiotics which have all helped me tremendously.  Three days later I had an Anaphylactic reaction.  I thought it could have been new supplements she started to give me but then I had another Anaphylactic reaction 2 days ago.  I finished the doctors supplements months ago.  The only thing that had changed was again I did not take my supplements i.e.; anti-inflammatory support.  And I found out I am allergic to Benydral!  (It keep me from closing my throat first though, I did not need my epi pen!)

I had allergy testing done and learned I am highly allergic to almost all dental materials used in composites and root canals.  I am going to get four teeth pulled, the ones that I had worked on 5 years ago.

There seems to be so many contributors and more than we are able to identify yet. But I think we are putting pieces together one-by-one.

I really look forward to reading about how you all fare as time goes on.  Things that worked for you, things the doctors have figured out, etc.

Good Luck!
From a 38 year old Mom

[Nikoelle]

I wrote the above entry and forgot to respond to a couple of questions.

I checked my journal and both of my anaphylactic reactions happened just before my menstruation!

I have a fever and chills with my hives too.

My father has extreme bouts of swelling in his face but not hives.

It has taken me a very long time to recognize what foods I am sensitive to.  When I am sticking to the foods that are best for me, that is when my hives go away.  My diet is pretty radicle but it is better than these hives.  I think looking into food sensitivities and following an anti-inflammatory diet are important to consider.  We all have been looking for consistency with the hives but not many people are willing to look further into our new industrialized diets.

Wishing you all the best.

[MikeHi]

Have had hives occurring starting in the evenings (6 p.m.) and basically from the neck southward.  Stopped taking fish oil and garlic for 3 days and it eased.  Started back with garlic this morning and the hives broke out but faded after a couple of hours.  Will not take any garlic tomorrow.  I also take 40 mg of blood pressure tablets.  About 2 years ago I had a bad outbreak and eventually found out I was allergic to blue  food dyes used in icing and soft drinks including gatorade. I never had allergies before that!  Have gone through all the elimination steps in food intake, detergents and soaps and even checked out dust, cats (I have one very spoilt) etc.  Benadryl or any OTC antihistamine seems to keep me free for about 36 hours.  Thanks to all of you for your support and presence and hope my comments will help someone even in a small way.

[Charliecooley]

Hi All nice to see I am not the only one. I have just been diagnosed with autoimmune urticaria. I have spent the last two years going insane with extremely itchy hives. Anti-histamines dont work, steriod creams never did anything. Oatmeal baths were the only thing to offer some relief. At first I went and saw a dermatoligist who had no idea what was wrong with me and put me on the steriods. They would give me some relief but 3 months after finishing each dose it would come back. Not to mention the weight I put on and you can't take steriods for the rest of your life this is not good for your body. Finally went to an allegist/immunologist who eliminated that I wasn't allergic to anything but my own immune system. I am now on plaquenil it has only been 12 weeks but the hives have gone away and I am not itchy so we will see how long this lasts. I was wondering what people find helpful in there day to day lives which may help reduce symptoms. I also get an very bad heat rash in extremely hot weather (I live in australia so am exposed to high temps) which covers my calfs and is so itchy. Someone said to take vitamin C and multivitamins daily, has anyone found eliminating things from there diet helpful?

[Dr Rajput]

Hi, welcome to the forum, in past years it has been noted that many cases of chronic idiopathic urticaria are the result of an autoimmune trigger. For e.g. roughly one third of patients with chronic urticaria spontaneously develop auto-antibodies directed at the receptor FcεRI located on skin mast cells. Chronic stimulation of this receptor leads to chronic hives. Patients often have other autoimmune conditions such as autoimmune thyroiditis and some other auto immune disorders.

The administration of sedative antihistamines, such as hydroxyzine (25 mg), at night may also help relieve nocturnal itching, but the patient must be warned of continuing impairment of cognitive function during the following day. Alternate-day corticosteroid protocols for long-term management, has shown evidently with satisfactory results in patients.

I suggest you to consult immunologist for further evaluation. Take care and regards.

[Marcelinha]

Hello everyone. How fantastic to find this comunity. My mother has been suffering from an urticaria and apparently is an autoimmune urticaria. Can soomebody tell me the difference between that and a chronic idiopatic urticaria?
Thanks a lot
;)

[Marcelinha]

Hello everyone!
Just joined this group. It was very interesting to read all the feedbacks and questions.
My mother just had her appointment with the specialist in allergy and what he said to her was that basically theres no specific reason for this to happen (idiopathic, as you all know) but he also mentioned that in this type of urticaria the best treatment was NOT an antihistaminic (because is ineffective) but an Immunosuppressant, similar to those use in transplanted patients but in a smaller dosage.
We are new at this topic and we need all the help and advise we can get.
Also would like to get some dietary advice (what foods to avoid)
Thanks in advance!
;)

[sarah104]

I also have Ic.Ater years of Dr. not knowing what was going on with me. For time to time when the hives and angieodemia got to the point i couldn't take it anymore I would go to the er My cbc would show my white cell count was thur the roof. Once the er doctor set me up a appt. with a cancer dr.. My doctor finaly made me a appt with a allergest after I told the nurse he either set the appt. up or I was finding a new doc. The er doc said to quit taking naproxium sodium for migrans so my doc swithced me to maxalt and on top of the hive the rection sent me into antfalictic shock seizers fever that lasted 3 days. They released me to se the allergist. I took hydroxine as needed which I alternated with benadryll I found if i took either to often they didn't work. ranitidine 300mg 2 x a day. Doxipin 10 mg 3 at bed time then went to 3 morn. and night. zyertect 3 times a day. and ocassonily i would go on a steriod pack. It came to the point I was taking all this and was on 18days of steriods and had to get 2 steriod shot during that time which only to the angiodemia down a noch. The allergist said i was ''beyond his knowledge'' and told me  he had went to med school with Dr kapplen sc and he used to be good friends with him but had lost touch. He decided to send me to vanderbilt in nashville 5 hours away which was worth every min of. If vanderbilt couldn't help he was going to send me to kappelen in sc. Dr.ryszard Dworski asst. profesor of med. put me on sulfasalazine. he decided that his first choice of placquinil would problely not work do to the severity of the urticaria and angiodemia. It has been 6 months and I don't break out anymore and have cut down to 2 zyrtec 1 ranitine 1/2 morn 1/2 night 3 doxipin night 2 sulfasalazine (which if needed in future I can take 4 tabs 2 x a day). If i take meds a few hours late i start itching under my skin and if i miss a dose i start to break out. But at last after 6 years of hell We have found a combination that work. I know it will need ajusted in the future but am hopefull that it will contine to work. an unexected benifet of adding the sulfasalazine (immunne supressent) was that it helped my bladder. I was having hyrodestention every 6 month and doing cather treatments at home in between. I have not had to take a bladder treatment since i started taking it.Also have a reduce # of bathroom trips.I had all but lost hope my advise is keep tring go to as many dr. as it takes they really started listening to be when i started logging meds took and when and took pics to go along with them.To my suprise that one added pill controled hives angiodeima and I c went into remission. Thank god. Alway carry a epi-pen it saved my life before this answer came from above.

[hopeful551]

You said that you had a CU test that turned up bad....We know that the CU test shows that you have autoimmune urticaria.  I had the same thing happen to me.
You said in your last post that you were taking meds that produced histamine, and that if you didn't take them, then you would be hive free???  Did I read that correctly?  Is that to say that your CU test was not good because your body was creating autoantibodies to histamine from your meds??? I believe anything is possible considering most doctors don't even know what to do with people like us :)  I am hoping that that was the case.  Please let me know....that gives me hope.  I may be that one person you helped from your post :)
Thanks to all who have shared their info....I think that we can help each other better than most docs!!!

[hivessurvivor]

I was diagnosed with AU in Oct 2010.  I have had severe hives starting 15 years ago but only about 3 bad episodes lasting a couple of months each episode.  I was a bit relieved when I finally was diagnosed with AU, because no one had ever been able to give me an answer.  Thankfully, Zyrtec works well for me in preventing the hives and I am now taking it daily.  BUT...one thing my alergist also recommended is to GET RID OF MY FETHER DOWN COMFORTER and PILLOWS.  Dust Mites grow there and are not good for people who are sensitive to hives like I am.  The hives got at least 50% better the day after I got rid of the down comforter and pillows.  Then I bought a mattress cover and pillow covers.  I still have to take Zyrtec daily, but the hives have significantly gotten less aggressive and smaller.  

I'm so glad I found this group!!  I will pray for all of you!

Thank you!

[mel31953]

Hi, I'm interested to know how this has affected women during pregnancy and if anyone has gone into remission only to have it return in pregnancy?  My story does have some positive outcomes for some of you and may provide a bit of light at the end if the tunnel.... I have been virtually hive free for the past 6months and the 6months before that less and less. There has still been a tendancy for my body to react occassionally but nothing like the horrible time I had just after my first child was born 2 years ago. Ok, so I was told I had fibromyalgia when I was 15 (which is an auto immune deficiency where excess antibodies attack your connective tissue eg. muscles around wrists, knees. It feels like you have chronic fatigue or similar). I took predsilone and possibly plaquenil and it went away after a couple of months. My Mum also suffers with this and finds it is triggered often by being run down in any way either physically or emotionally. I have not had any bouts of fibromyalgia flare up since i was 15 and I am now 31.
But here is where things become interesting. At the end of my pregnancy I developed PUPPP syndrome which is a form of urticaria which begins with wheels and rashes on your belly and spreads to arms legs and buttocks. It was incredibly itchy and it wasn't until after I had my baby it got worse. My doctor treated it with cortisone cream and antihistimines, which got rid of t in 2 weeks. However, straight after this hives began coming up mostly at night and responding to heat or pressure (i thought, as they would be where my bra strap was or the hip I laid on in bed, soles of feet and fingers). They were very painful and felt like burning bruises. Then facial angiodema began and that is the worst! I feel sorry for all who have to put up with this running their lives. Facial swellings of lip and eye that were huge and painful and very random. I took claratyne (loratidine) which helped but some swellings still lasted for 24 hours. 12 hours average and cold packs didn't help. I found aloe vera plant gel slathered thickly would help the wheel type hives on my body but nothing ever helped the face ones which began to come more often once my stress levels increased. They could be triggered by bumping my lip or an itchy eye as well. My doctor put me on a low dose of predsilone which helped minimise the effects but did not stop them and every time I reduced the dose by a mg i would have a facial swelling. My doctor sent me to an allergist who had no clue and thought PUPPP was made up and thought that basically the shock of pregnancy had made me allergic to something and put me on an elimination diet of all yeast products because  thought I had a yeast allergy related to high candida. He put me on nilstat tablets to eliminate excess yeast. He also made me eliminate citrus, berries, alcohol and some additives in foods. I also got a salicylate diet from my mother in law and decided if I was going to eliminate I might do it properly ( i didn't believe that yeast problem). So I eliminated all salicylates ( some meats, vegies, fruits, all sauces, flavours - check it out). I also started to record hives and what I had eaten prevoiusly. This gave me a feeling of control and like I was attacking the hives back. The food was limiting but still nutritious for a breast feeding Mum, it was just basic. It helped. I don't know if it was the reduction of stress levels associated with feeling some control and seeing small improvements that assisted ( always got hives when stressed without fail) or the diet restriction but they improved and bouts were rare. I reduced my predsilone very gradually by 1 mg a week and had a small flare each time. I stayed on 1mg for a while then finally cut it to. Still used claratyne when required. Then I began introducing foods gradually and found that most things I could eat again without any flares. Even yeast was the last thing i tried and it was ok again. Still had the odd swelling and that has remained for the last year and a half but they have got less frequent and faster to go away once a claratyne was taken. The facial ones are virtaully non existent. Last one was triggered by a mossie bite nearly 8mths ago. Feet are the main ones still and burning itchy and painful soles of my feet still come up if i don't wear shoes when it's cold or hot. Thing is i just got pregnant with second baby and last night had a huge foot sole swelling that was the worst for 12 months and was painful for around 4 hours at least. Has anyone had a remission and began urticaria again in pregnancy. I'm scared I have started it again! can't really take meds and last time I had a few throat swellings that were bloody scary and don't want that when I'm pregnant! I feel for everyone and tell you not to give up but try everything and anything to give you some control. Try to be healthy and look after yourself and find meds that works and maybe even a diet. I feel like anything can trigger it but you may find some things you can avoid that my give your immune system enough of a break it can fight back a bit. Good luck and look forward to more advice. This can be very isolating.

[dontgetanyolder]

Hello everyone!
I've always thought there was a lack of places to discuss our condition, so I'm happy to see this.
I am a 19-year-old who has had very severe Autoimmune Urticaria and Angioedema for around 8 years now. I spent a few of those years undiagnosed and in hospitals for anaphylaxis and chronic hives. After diagnosis, I went through every drug (steroids, h1&h2 receptors, antihistamines) until being put on an immunosuppressant (cyclosporine) last year. It is very effective for a time, and I do highly recommend it if you have been unresponsive to other medications as I was. However, I still had many symptoms with the Cyclosporine and am soon to go off of it (it is only intended to be used for a time, after all, and can cause complications if taken for too long). The next step up for me is the IVIG infusions. Experimental, yes, but a chance at having a normal life. My insurance does not want to approve it, but I am praying that with my immunologist's appeal, I will be able to get it. It's label use is for Common-Variable Immunodeficiency, but it would produce antibodies for me (forcing my immune system to stop producing it's own overactive ones). I am very hopeful about the possibility.
I have lost so many opportunities due to the pain, school/work absences and hospital visits. No one wants to hire a girl with a swelled face and hive-covered skin a few days a week, either. It's not the best for customer service, you know?
I am very glad that most of you have been able to manage your condition with a singular medication or a cocktail of antihistamines & h1h2 receptors, but if you are like me and have been unresponsive to nearly all meds- I'd like you to know that you aren't alone and that there will always be new treatments.

[Marcelinha]

Hello!
I have a question for those who have been treated with immunosuppressants:
1) Is the treatment always temporary?
2) For how long (maximum) can the drug be taken?
3) What are the side effects or possible complications from taking this drug?
4) What if when you stop the treatment the hives and swelling come back? What would be the next option?

I ask because my mom is about to start a treatment cycle with cyclosporines for her AU and we are not sure how good it will be.

Thanks a lot in advance.

[brendalogy]

I've been tracking this thread for quite some time and finally, decided to say share my story as well.

I've had chronic idiopathic urticaria since September 2005. It had a suspected autoimmune nature all along ... but it was only recently when the doctor actually did a test and discovered no autoimmune properties.

Been on 1 tablet of Cetirizine (H1 antihistamine) nightly for 5 years which kept the hives down really effectively. In fact, sometimes one tablet every two nights was also good enough. Anything longer than that and the hives will return. But hey, one tablet nightly and I was well within stable.

But all that changed in October 2010. The hives suddenly returned with a vengeance for no rhyme or reason. Was rushed into the ER three times because of particularly bad episodes in the middle of the night. The hives were big, red and angry. Horrendously itchy, and the swelling was so bad that my joints were flaring up. Injected with different types of antihistamines. The first injection (Piriton) worked. But when they tried it again during my second ER visit, it seemed that I had stopped responding to it so the ER doctors had to give something else (Promethazine).

It worked, and the ER visits stopped.

However, Cetirizine stopped working for me and so I got my medications tweaked. I am now on Telfast (H1 antihistamine), Famotidine (H2 Antihistamine) and Atarax (H1 antihistamine) daily. This cocktail of medications used to work pretty well ... but they are now barely keeping the episodes down. I get hive episodes almost every night and it's itchy and occasionally, painful.

Then my doctors decided to 'jolt' my immune system a couple of weeks ago by putting me on a short-term high-dose steroid treatment (prednisolone) and gradually wean me off it. All in the short period of one and a half weeks. The prednisolone worked wonders at keeping the hives down ... while I was on it at lease.

I didn't manage to last through the entire treatment, though. I developed a kidney infection because of the immunosuppressive nature of prednisolone and had to stop taking them immediately so that I could recover from the infection. And less than two days after I stopped prednisolone, the hives are back at full force ... and even much worse than before.

I'm still taking Telfast, Famotidine and Atarax daily with little results. I am waiting for my next appointment with the immunologist to review through stuff. :/

[Marcelinha]

Oh my God!
I'm really sorry to hear all that. But the question here is: If the concluded that your hives were not from autoimmune origin, why are they giving you immunosuppressants? Should they instead find the cause to be able to treat you?
I really hope you get better soon and your doctors find the right medication to help you handling your condition.
I have heard about alternative treatments, maybe you should give them a go.
Take care and please keep us updated.
Thanks
;)
M

[brendalogy]

@Marcelinha
What I found really strange was that the tests conducted by my immunologist was nowhere similar to the tests I've read about on this site. :/ Rather, I was tested for specifics such as lupus and they all turned out negative.

The conclusion for now is that mine is not an autoimmune response but a hyperimmune response - meaning that I am (possibly) reacting to something in the environment. (My IgE counts were very high - but the doc' felt further allergy tests were unnecessary because I'm going to be receiving the same treatment anyway - which made complete sense to me.)

Severe cases of urticaria (autoimmune or otherwise) are usually treated with immunosuppressants because it involves an immune system response.

Ah, well. I've pretty much accepted it as part of my life. I've stocked up on lightweight cotton throwovers and pants so that I can hide the hives on my arms and legs. Not looking at alternative therapy though, because I have a smorgasboard of other illnesses and I'm avoiding possible adverse interactions between the different types of therapy.

To the other urticaria sufferers here ... whatever it is, DON'T GIVE UP HOPE. Trust your doctors and your treatment plans. And more importantly, don't lose that self-confidence. (;

[brendalogy]

In response to @Marcelinha

"Hello!
I have a question for those who have been treated with immunosuppressants:
1) Is the treatment always temporary?
2) For how long (maximum) can the drug be taken?
3) What are the side effects or possible complications from taking this drug?
4) What if when you stop the treatment the hives and swelling come back? What would be the next option?"

Hey babe, I am no doctor and neither do I have any medical background - but I have personal experiences with immunosuppressants (prednisolone) and so I'll try to help here. (:

1) Is the treatment always temporary?
Well, mine was. It is quite common for patients like me to undergo temporary courses (lasting between 1-2 weeks) of immunosuppressants especially after a major flare-up. I haven't heard of anyone who has been on immunosuppressants permanently yet. But as far as possible, it is good practice to avoid long-periods of steroid medication because they come with a multitude of side effects - increased risk of infection, higher susceptibility to colds and viruses, slow wound healing, behavioural changes, insomnia and more importantly, your body becomes dependent on the steroid (especially after prolonged use).

Generally, alarm bells start ringing in my head if any of my doctors prescribe steroids for more than 2 weeks, and I'd discuss with him any possible alternative treatment plans.

2) For how long (maximum) can the drug be taken?
Well, there are people who take it for months and others, years. I generally take it for 1-2 weeks (as mentioned above). It depends on the patient's condition and general health as well.

Steroids are generally stopped immediately if the patient falls sick (i.e. bacterial infection/virus). But otherwise, one should never stop steroids immediately without a period of 'weaning off' - gradually reducing the dosage to reduce your body's dependency on the drug! (Your body becomes so dependent on the drug to the point where its ability to produce a certain type of hormone is reduced ... and stopping the steroid suddenly can lead to a syndrome called Addison's Disease.)

3) What are the side effects or possible complications from taking this drug?
Covered in my answers to (1) and (2)!

4) What if when you stop the treatment the hives and swelling come back? What would be the next option?"
This is the question in my head at the moment too, because I am currently stuck in this situation. I am in the process of having my antihistamines tweaked. Still in experimental mode. Will only know in the weeks to come. :/

I hope this helped. (:

[Marcelinha]

Thanks a lot for taking the time to give me all that info. You rock!
I really hope your condition improves with the treatment you are having.
We will keep in touch :)

[brendalogy]

You're most welcome babe! Likewise for you, I hope things settle on your side too. (:

[russellb]

I've just found this board in the last couple of days while trying to do some research on any progress in the effort to get Xolair approved for treatment of Chronic Urticaria.  Through some effort (contact directly for more details) I have been able to get insurance approval and after dealing with hive for over a year, Xolair got rid of them pretty much completely following the very first doseage (I still get one or two when it gets to be about time for the next shot, but this is nothing compared to what I was going through).

I had been on various H1 and H2 antihistamines which didn't help at all, and had been taking predisone to get some relief (but with a ton of side effects).  My doctor was about to put me on a immunosuppresant before I was able to get the Xolair.  Given the problems a lot of people seem to have had with the immunouppresants, I'm very grateful I didn't have to go that route.

Anyway, I just wanted to recommend to everyone here that they look into Xolair if they haven't already.  Not many doctors seem to be aware of it's usage in this manner, but the information about clinical trials currently ongoing is readily available online.  In my case I saw numerous specialists (including an entire panel of dermatologists at NIH) and no one ever mentioned Xolair.  The way I found out about it was because I was calling my allegerist to get a refill on a prednisone Rx over a holiday, and the allegist from another practice who happened to be on call covering for him told me about these Xolair trials when I told him that I needed the prednisone because I was being treated for urticaria.  Complete luck - but I'm super thankful - the hives were really having a terrible effect on my life.  As I'm sure many of you know, it's a very difficult thing to explain to others not experiencing it firsthand (i.e. you boss looks at you dubiously when you don't show up for work because of "a rash")

Given the fortuitous way I found out about Xolair, I just wanted to put a few posts up here on various Uritcaria threads in the hope that I will help someone else solve their problems!  Good luck!

[miki_al]

I just a call from the nurse.My daughter has positive CU INDEX AND ANA.She said that she has autoimmune urticaria.We are so worried.She is 13 years old.She has been having this symptoms for months.sometimes angioedema(swelling lips and eyes).Moslty during the nights itching legs and arms.mostly legs.We are so frustrated.She is just a kid.

[pickls5]

I just found this while researching for my 8 yr old son. He got sick in Sept of 2010 and got hives. he was covered head to toe, seriously on his head and all the way down to his toes.  He had them for over 6 weeks with NO break.  His hands and feet swelled up and everything.  We had no clue what was wrong with him.  Allergy tests show he does have some enviromental allergies.  But blood test also shows he has AU.  He takes zyrtec/singular/nasonex everyday.  If we miss a dose he gets hives the same day.  He has had two breakouts since we got everything under control.  The last one started with another illlness.  His fever got up to 105 at one point.  I gave him ibuprofen.  Until I found this blog I didn't know that ibuprofen could cause hives!!!  Why didn't someone tell me that?!  I guess there will be no more ibuprofen for him.  I am saddened to find that this is probably a life long issue for him. : (  Hopefully we keep his symptoms under control.

[Hiver]

miki and pickls,  I'm very sorry to hear about your kids.  The hives are terrible for anyone but I especially feel for kids afflicted with this.  I also feel for you as I'm sure you feel bad seeing your kids suffer.  I had the hives for over 5 years and although I'm still on my 2x/day cocktail of drugs, I've been symptom free since last March.  Well, I had one little bout in November but I'm fairly sure I caused them by overscratching a bite.  I've started tapering down on the prednisone and all is still well.  If things stay good I'll start tapering off of some of the other drugs.  I'm extremely happy as I was very seldom without them for more than a couple of days, even on the drugs.
Don't give up hope.  Keep a journal to try and see what foods or enviornmental factors may be causing it.  You can at least rule things out.  And, they can disappear just as mysteriously as they came.  I wish all here the best.

[Marcelinha]

Hey! Really sad to hear about the kiddies suffering this ordeal called Autoimmune Urticaria.
I have and advice, try every antihistamine in the world before immunosuppressants, there are so many side effects related to them and sometimes doctors don't mention that.
My mom is taking Allegra 180mg twice a day and if she misses a dose the itch starts so we thought that maybe immunosuppressants would totally sort out the problem, but theres no guaranty the hives will go away for good and the doctors mentioned that is better to delay that option for as long as possible.
Another important thing the doctor told us is that in an individual with AU the reaction can be started from small and sometimes undetectable infections. My mom had a million tests done and a stomach biopsy showed he has Hellicobacter Pillory, never had stomach problems but theres a possibility this is triggering the AU.
Also check the list of medications and foods people with AU shouldn't have. No NSAID's, strawberries, grapes, nuts, cocoa, etc, matured cheeses and meats, etc...
Wish you all the best
;)

[missdee71]

I have had hives on occasion in the past but nothing widespread. When getting my blood pressure taken my arm would get itchy and red. When I would get down in a squatting position and the skin on my legs pulled tight the same thing would happen, but it all seemed to happen as a reaction to pressure on my skin, until......I was diagnosed with Influenza, bronchitis, sinusitis, and pharyngitis almost a month ago. I was given azithromycin and tamiflu for five days. My lungs still were full of "crap" and I went back to the dr. to find out that I had developed pneumonia. I was given a ten day course of omnicef, a xopenex inhaler, and some advair. On day nine of the omnicef I woke up at three in the morning with my hands feeling like they were burning. I got out of bed and turned on the light to find my hands red and itchy and only running cold water over them for several minutes helped. As the rest of the night and morning went on I began to have itchy skin and hives everywhere. It would be my back, then my legs, then my arm etc. etc. Initially my dr. seemed to think that it might be the omnicef that I had an allergic reaction to. After talking to him for a few minutes about my family history, my mom had scleraderma (autoimmune), my dad has multiple sclerosis (autoimmune), and various aunts, uncles, nieces, and nephews have R.A. or lupus. Now he is not sure but is leaning more toward this being autoimmune. I see an allergist tomorrow. I still am itching horribly at times. The benadryl and prednisone seem to help for a while but it comes right back as they wear off.  I have been off of the omnicef for three days now so I am thinking that surely must be out of my system. I am itching and burning terribly (feet and hands right now)  as I try to write this. I am so sorry to hear of so many suffering the same plight but glad that someone understands. I wish I knew what the future holds.

[Chloe1192]

I'm 18 and was diagnosed with Chronic Autoimmune Urticaria when I was 14, after having symptoms of it for a year. My doctor told me that it usually only lasts 3 to 5 years, and I'm only just now finding out that doesn't seem to be the case. I haven't been on any medication for it, since I thought that it was just going to be a relatively short-lived thing, and I thought I could just stick it out. I CANNOT live with this to this degree for the rest of my life, are there any treatments you guys would suggest?

[brougham]

I finally saw an Immunologist today (waited 3 months for appointment) who pretty much immediately thinks i have Autoimmune urticaria. It started all of a sudden about 5 momths ago. I have had a swollen lip once a few weeks age which really freaked me out at the time. I have been popping antihistamines like lollies and they help. I've had three short courses of Predniolone for relief but the hives come back as soon as I start weaning the dose. Dr today suggested Ranitidine which I note from many others seem to help. I'll get the script filled tomorrow. I'm a little saddened to read so many others who have had these hives for years, but I am trying to tell myself there are worst things to be diagnosed with

[Keilla]

This is the fourth time in my life that I have had hives.  The first two episodes occurred when I began each semester of University.  The next when I got a new job.  The current one when I started interviewing for a new job.  I now have the new job, but am not sure if I will be able to keep it...all because of my hives.  My hives normally last for about six months and then just disappear.  I started high doses of Prednisone in November and because of the effect they have on my immune system, I have gotten sick twice.  I also gained 14 lbs.  I decided I had enough of the steroids and opted for a homeopathic remedy (my hives are obviously due to stress).  It was working for the most part - more than 90% of the hives gone.  


Well, I've been sick for 3 weeks.  At first I was told I had a virus and to just get lots of rest.  I did that - working from home when I am brand new - not good.  Yesterday I found out I do not have a virus - it is a bacterial infection and I have to take antibiotics for 10 days.  I started them yesterday and within a few hours, my entire face had swollen up.  Today, the hives are all over my legs, chest, butt, arms and hands.  My body wants nothing to do with the homeopathic herbs and vitamins that were working so well.  I have to take this medicine to get better and don't want to go back on the steroids.  It is so difficult - some are itchy, but most are very painful.  Just moving my hands around is extreme pain.  I wish I could just take a leave of absence from work and get through this at home.  Assuming I won't have that choice and will have to go back to work soon - I am wondering how many funny looks I am going to get with the hives on my face.  So tempted to wear a scarf, but that will cause just as many stares??

I feel sad for all of you that have to go through this.  Thanks for listening.

[Momof02]

My son (age 5) was diagnoses with autoimmune urticaria at the end of 2009.  When we went to the er b/c of the whelps the doctor told us it was an allergic reaction to something he'd eatten or used.  They told us to use an antihistimine and if it wasen't any better in a day or two to call his regular doctor.  They ended up sending us to an allergy specialist who then did blood work to tell us that he was allergic to milk, cheese, eggs, soy, wheat, and penuts.  For about two months we'd go to a health food store to find products without any of these ingridents.  We eventually went to see another allergy doctor that did other test and told us that the only thing he was allergic to was grass.  We had to wait another three weeks to find out that he acctually had autoimmune urticaria.  He's only had one other break out and it was in November of 2010.  He in on Zyrtec twice a day, and can take Zantac if needed.  Seems he only breaks out in these whelps in the winter time.  His doctor said that there is a possibality that he could out grow this condition...is this true??

[sicofhives]

Hello,

Its comforting to know that there are others out there suffering from this.  My hives started suddenly in September of 2009. Since then I've seen my docotor, an allergist and an internist.  I've been told by all of them that I'm "healthy" and to take an antihistamine whenever I need it to control the hives.  I take an antihistamine once every 2-3 days however it seems from the comments posted on this forum that it gets worse the longer you have it.  I haven't seen an immunologist however I think that's my next step.  I found this book on the internet and I wondered if anyone else has the book and if the remedies the book suggests work.  Its called Natural Urticaria Relief by Kate Andrews looking forward for your feedback.

[xraychk22]

I have had Autoimmune urticaria for like 6 months now. I'm taking Allegra during the day and hydroxizine, dioxpen and ratatidine all at night. Needless to say I'm exhausted. Oh and now prednisone for past 2 months because the rest doesn't work.  I'm pretty frustrated and can't even imagine having this for 10 years!

[bkehr]

Very sorry to read about so many that are dealing with this condition, but relieved that we have a place to vent! :)
I am a 41 y/o female, and I seem to get seasonal hives. I have Multiple Sclerosis, which was diagnosed in 1996, so my immune system is already compromised, but these hives have only been occurring during the late winter months for the last three years. Some mornings when I wake, my upper lip is swollen. Until today it was just the left half of my upper lip, but this morning is was my entire upper lip. The swelling goes down over a matter of a couple of hours, but the hives persist throughout the day. The first breakout of the season starts out on the sides of my trunk and abdomen, but spread, most recently to even my hands and fingers.The wheals itch terribly, and though Benadryl helped in years past, even clearing the hives up for the day, it does little more than decrease the itching now.
I am taking all of this in right now. I've read through every post, and my symptoms seem to pale in comparison. I feel for every one of you, and hold onto hope that we can find a CURE, not just a treatment, very soon.

[klen89]

I have suffered from idiopathic chronic urticaria for about four years. The first time was a solid year of hives, swelling, and anaphylaxis that sent me to the hospital three times. Then one day it just disappeared. Last week, my hives came back. About three weeks ago I got invisalign braces. I had no reaction to these at all. No hives, no swelling, nothing. Then last week I woke up with small hives on my wrists. Since then they have exploded into patches of swollen bright yet weals everywhere. Does anyone have any advice of why this could be happening or what to do? I have been tested and I am not allergic to the product the insisalign is made of. I have been prescribed sever strong anithistamines and Doxepin. EVery morning when I wake up no matter where I sleep they are covering my body. If anyone has ANY advice please help. I am a college student and this is ruining my life. I am starting to fail because I am so uncomfortable and itchy that I can't concentrate.

Thanks

[janiewanie345]

I was diagnosed with Chronic Ideopathic Urticaria in 2005, after suffering for two years with such bad, uncontrollable itching that I actually became homebound.  Unable to dress properly to go out, I was about at the end of my rope.  I'd seen doctor after doctor after doctor and was told various stories - it's dry skin, it's bug bites, etc. No one ever mentioned Urticaria. Finally I asked my pcp if he could recommend someone who actually knew something about this condition and he sent me to a dermatologist. He was very familiar  with my symptoms and he was the one to diagnose CIU.  After trying many of the same,useless oral and topical drugs the other doctors had prescribed, he put me on 250Mg of Cyclosporine with the admonition that I was required to have blood work done every 2-3 months.  It didn't happen overnight, but at some point, the constant itching  pretty much went away, and I was able to have a life. This  is not to say that it was perfect.  I had flares that would last weeks at a time and my always perfect blood pressure became high and I had to go on medication.  But overall, after living two miserable years pretty much like a hermit, this was heaven. I continued on with it and then in 2008 had my first attack of angioedema. Needless to say I was petrified because nobody had mentioned that this was a possibility. I won't go into every detail, but I, like many of you, have been to the ER many times. Then, after years of being on Cyclosporine, high blood pressure meds and Lipitor for cholesterol, I developed horrendous leg cramps. Don't ask!  There was nothing to take for them and the pain was beyond description.  I'd get them in both legs, any time of day or night and they lasted from 40 minutes to hours.  I'd get rid of one and another one would start. I wasn't able to sleep because the second I got into bed, they'd begin. And as I said, it wasn't just at night - any time.  I literally was afraid to walk or do anything because I knew the most innocuous thing, or nothing, could trigger them.  This went on for about 3 years. Then, last year, Oct. 20, 2010  I had the most serious angioedema episode. This one landed me in ICU and then admitted to hospital. Throat, tongue and neck so swollen that I was told that unless the swelling leveled off I would need intubation. Thankfully it didn't come to that. When I left the hospital they gave me more prednisone on a sliding scale. But the day I left the hospital I realized that I WASN'T ITCHING!!!!!  For the first time in 8 years I wasn't itching. I decided at that moment to stop the Cyclosporine, the high blood pressure meds and the Lipitor.  (spoke to my doctor first)  Sorry to say that although I had 5 absolutely wonderful weeks with no itching, it came back. I got another 12 day course of Prednisone from my pcp and again, the itching went away completely. But then it came back and with a vengeance. But, I have not had any more cramping, so that's something. In February I found a guy who actually specializes in Urticaria.  He did a basophil-histamine test and found that I test positive. (Why the other guy didn't do this test, I don't know)  So far the medication he prescribed is worthless - Zyflo CR 1200mg twice daily and Clemastine 5.36mg twice daily. Now he put me on Dapsone which I just started.  I'm basically a prisoner again and have been since February because my skin is so sensitive and itchy that clothes exacerbate the problem. I'm home most of the time and walk around in loose fitting pajamas. My skin is an absolute mess from scratching (you have to be dead or in a coma not to scratch no matter what they say) and  I'm just about at the end of my rope, but I'm hoping the Dapsone will help.  Hindsight is 20/20 but I'm  wondering if I should have just stayed on the Cyclosporine when I got out of the hospital.  As it stands now, the guy I went to in February told me the next step would be Cell-cept which is akin to Cyclosporine.  It's just too damn bad that prednisone has so many bad side effects, because I must say that I felt positively fantastic the short time I was taking it. If I remember correctly I was always very hungry.  So this is my story, although long, it's pretty abbreviated.  I feel for all of you who have this condition.  I really don't think anyone who doesn't have this can understand what it's like.  There have been times when I felt like sticking my head in the oven. Living like this is not living.  I used to be a positive and very cheerful person, but this has made me so unhappy. And it's extremely unpleasant for those with whom we live. They can send a man to the man, don't you think they could come up with a drug to eradicate this itching?

[achilles2]

I am sorry all of you suffer so much. I have been a little research on the internet and I found that there might be a possible link with Celiac Disease and autoimmune uticaria. I am just wondering if any of you have been tested for Celiac's. Some people do not have gastrosymptoms and instead it shows up on the skin or some other way. I get migraines and nerve pain if I have gluten.
If you have not looked into it, it might be something worth exploring. Remember even if the blood work says that all is fine, that you could still be reacting to gluten. The blood test is not sensitive enough to catch a large percentage of people with Celiacs.
If you are interested here is a site where I found some info:
http://www.revolutionhealth.com/forums/auto-immune/118697

Also here is a quote from someone on the Celiac forum:

"Some general info: Make sure they do the full panel when they do the blood work. Ask for total IgA; IgA/IgG gliadin, transglutaminase and a gene (allele) test. Many docs will do just the transglutaminase and that's not enough.

If the blood test comes back negative, don't immediately think gluten isn't the problem. Many people don't 'pop' positive on the blood test even if they are celiacs or gluten sensitive.  

The upper endoscopy with biopsy is considered the 'gold standard' to diagnose celiac disease, but some don't reveal flattened villi and again, they can be told they're negative."

I hope all of you find the answers you need and get some relief,

achilles2

[LDY4CHRST]

Hi,  I am so blessed to have found this site.  I am a 35 years old female who has never had any problems health wise, in my life. I got to the doctor every year to keep up with my check ups and have always been a borderline nemic for years.  After a relationship that I was involved in a back in 2005, i went through a mild depression, started having Anxiety attacks, heart palpitations which brought me through the emergency rooms plenty of times, and that is where i started taking anti depressant pills. I stayed on them for about a year, and got off. If i felt that i needed them, i would take them every so often but not for long.  My doctors would always tell me to that stress could lead to this and that if i didn't get it under control it would lead to other type of illness. Well after being off of anti depressants for about almost 2 years, i started back taking them due to a drastic change in my job and relationships. In Oct, while take Lexapro, i noticed systems of what i latered find out  was from Auto Immune Hives back in   Mine started with itching on my legs. I thought mabey it was just detergent that was sensative to my skin. Then days later, I started  noticing the rising of my skin all over my tighs. They would move around my body off and on until finally they never left until i took some Benedryls. I remember back in 2005, of having something similar, but it was due to pressure from a boot i was wearing, i would get welts and eventually it would turn into a big blister where the zip would go up my leg.  With benedryl recommended from pharmacist, it went away.  So up until now, after the hitching, days later i woke up with a swollen lip. I thought for sure it was in the detegent i was using, due to the pillows and sheets i had just washed.  So immediatly took pictures of my face and went to Primary physician. They said since the swelling had gone down due to benedryl, they would not give me a steriod shot.  They gave me a free pack of zyal and i was on my way. Took them for a few days, i was fine.  Then once i ran out, i was back to where i was before...my primary then referred me to an allergisy/immune doctor. I finally went in after one day, not being able to walk and my whole body stung like a bee had bit me. I was practically walking on my heel into the doctors office.  Im African American and for hives to show up on my body and for them to see the redness, it was pretty bad.  Well the doctors all assured me that this was comman and that they were glad i came in. They me 3 shots, one for steriod, one for bendyrl and i can not remember the other ones.  But they did give me an oral pill to take of xzyal. I had to rest for 15 minutes and after that i felt i was completly cured.  After the doctor ask me a number of questions, he wanted to run blood on me.  I had told him a while back during my anxiety attacks  in 2005, an humantologist, discovered my ANA was high. At that time, she just told me, it was nothing to concern with right now and that it was probably hereditary for me.  She said, ANA basically helps you fight off infections and that my body, is going into overtime trying to fight an infection in my body.  So in all, she told me to eventually go to a rhemotologist for further investigation.  I never did, cuss by then my insurance had run out. So now im up to 2010 with this breakout.  Once i got the blood work done to rule out allergies, they found that my TPO was 1000 and ANA was high.  Naturally i wanted to know what this meant. Basically my doctor told me to go see an Endrogronolist cuss its possible that i may have tyroid problems in the future, in which is why my TPO was high.  MY THIS was normal, which was good, but my TPO which is the antibodies in my system, were producing alot more then should. So my allergiest, diagnosed me with auto immunune.  I went to the Endo as suggested, and they quickly ruled out any systems of me having hives from my thyroid issues. My T4 was all normal, and basically my doctor said, im just 1 out of 100 people that has a TPO which basically means i need to just be monitored. But for now, i was not put on anything.  I went back to my allergist to test for detergent, which i was highly surprised they said, they have never tested before. They said it's rather difficult to test this for allergies, but they did it anyway. So they put detergent on my skin for 2 days and patched it up with a bandaid,. I wasn't to take it off until 2 days.  They found no reactions with 2 of the detergents but did notice that Tide did give me a mile burned rash. But like anything you are not suppose to be detergent on your skin for a number of days is what they told me. So in all, i have been trying different things in my diet. I to have cutt out regular milk and have gone to Almond milk. I don't eat as much sweets due to i notice that my hives seem to worse when i eat too much sweets or cafeeine. While the allergiest don't recommend a detox he said, some foods can trigger your hives but the food does not cause the hives. He said, the thing about auto immune, is that all they know is that it is partially herditary and partially enviromental. So for now, he said, i will just have to accept my diagnoses and take the medicine until there is a cure.  IM HERE TO SAY....im a believer that through pray and faith, when all test and other things has failed, there comes God. He made us and he can fix us back to perfect balance. So i have been doing alot of soul searching and praying, ans still trying to do healthy diets, because Faith without work is usuless. For a minute 1 xzyal 10 mg a day helped, until i ran out and had a flare up.  My doctor gave me a prescirption of predisone ot take for a week only to break the hives down to where i could get back on zyal again. I find that once i have a break out, i have to take predisone to calm them down to get me to a decent pill once a day.  But since then the xzayal has not worked alone. I then switched to Hydroxyzine 25mg, and i take that every 2 days. I find that i can go a day without it, and i figured the longer i can the better.. But if i go to long without it, i start getting chest pains and chills. I one day took a nap and my face swelled back up again.  My doctor does not want me to stop taking it in fear of another break out...so he said, to keep taking them faithfully for 3 months and then start declining to see if i could be in remission.  It;s a trial and error thing for me...and i want to encourage all of you to not give up. There will be a cure one day,,,..pray everyday and take your medicine to avoid flare ups...i will be praying for you all...with peace with this disorder.  

[LDY4CHRST]

sorry for the typos, i have a serious keyboard issue where the letters stick together. I hope you were able to at least understand my story. God Bless

[TaylorMarieLucy]

I am turning 20 years old in about a week, and I have had chronic urticaria since I was 4 years old. That's 16 years. What a battle it's been. They are usually an every day occurrence, if not every other day. I've tried so many different medications, including Claritin, Zyrtec, Allegra, Hydroxyzine, Xyzal, Zyrtec-D, and Doxepin. The answer for me is Hydroxyzine. I take Zyrtec-D as a preventative, which usually helps without making me drowsy. However, I need to take Hydroxyzine sometimes when the outbreak shows up anyway. Hydroxyzine, as helpful as it is, makes me unbelievably tired, disoriented, and unable to function, and to top it off, it gives me the munchies! I try to avoid it as much as possible.

I've seen so many doctors. Most of them told me that my hives were from allergies–rice, dairy, chicken, strawberries, preservatives that are in everything...pretty much, I'm allergic to air. We'll put it that way. But as I grew older, I started noticing that the hives also happened due to heat, cold, friction, fabrics, stress, stuff like that. Changes in season and temperature set it off. I'm also a very tiny, sickly individual. I am not the healthiest person. Basically, I'm the one who always gets hit the hardest with the flu that's been going around. Therefore, there are so many possibilities floating around that I'm not sure what I have. The hives happen all the time. Dermatographism is definitely present, but what about the allergies, the immune deficiencies, etc.?

My physician told me that there have been interesting treatment methods for hives, including chemotherapy. Does anyone have information on this?

A specialist I went to recently tossed around the idea that long-term hives such as those in my case are usually from something much worse, but it should have manifested itself already after 16 years. Does anyone have information on this topic too?

[cindy9712]

To start with... WHAT IS WRONG WITH ME? Anyone... No... Okay...

Well, I'm right now 13 years and 6 months old. I've had urticaria since February 2010, though I didn't get my diagnosis until December, same year. The first time my it appeared was on a trip with my mother and sister to the Canary Islands. We were walking by the beach, and since we had been walking for a pretty long time, we decides to take a dip in the beautiful Atlantic Ocean. What we didn't know, was that I was going to have itching, burning and hurting hives from when I got out of the water until we got back to the hotel. My whole body was red and I couldn't breathe properly because of my pulse that went through the roof. I believe the hives stayed for about 20-30 minutes, while my elevated heart rate didn't go down until after about an hour.

This same thing happened to me in June or July, when on vacation in Finland with my family, we took a late dip in the lake my the campsite we had our caravan at. Since it was cold I was only in for a few, not more than five, minutes. When I got up my body was all red, itching and burning like someone had thrown me into a bush with nettles (those kind that burn your skin). The same thing happened then as the first time; elevated heart rate, which lead to much harder and faster breathing. I also started to shake and so did my lips, like when you are really freezing.

This didn't happen to me again until late October, when it starts to get cold here in Sweden. When I was walking my dog, I suddenly felt my face getting all burning and itchy. It was probably below 10 degrees Celsius and it was raining. When I finally got inside, my whole face and neck was all red and burning, like if I had gotten an acute case of very high fever. It itched to, and I just wanted to go put my head in the freezer.

In November me and my mom then went to our local GP, but they couldn't help us (usually they can't, so we didn't really expect anything). In December we got a remmitance to the allergy clinic, and after five minutes of our first visit, we knew I had dermographism, and of course (drum roll) URTICARIA! Yay... not. Since the winter had already arrived, I was totally screwed. Me going out when the temperature is below zero is impossible. So we thought: "Let's wait until it gets a little warmer, like about 5 degrees above zero." Nope, forget that. "Well, 10 degrees then.". Never.

Now it's May and all I know is that I can't be outside if it's cooler than about 13 degrees outside. Which it is for about 7 months here in Sweden.  I also can't exercise, bath or even blush with out getting hives. Hurtful, very HURTFUL hives. My skin's all dried up from not have gotten almost any sunlight or moisture in the past 5-6 months.

Now to all my fancy medication... In December-January I ate various kinds of anti-histiamines, and some medicine for something in the belly area. At most I took 7 pills a day. This didn't work. In the end of January, we started a treatment with gammaglobuline. One shot in each arm every month for three months. This didn't work. Well, two more months then (five shots, since once they didn't have the right dose, so I had to take three shots at once). Now, all together, I have taken eleven shots in five months. It hasn't worked.

My last option (according to my doctor) is Methotrexate. We know nothing about the dose, only that it have worked on people who are extremely resistant to everything else (like me). There are very few studies made on treatment with Methotrexate for urticaria, and definetly none done on children. We are right now waiting to come to the Sahlgrenska Hospital in Gothenburg, where we can talk to someone who has experience of Methotrexate and children. My mother's on Methotrexate for reumathism, but on a very low dose. The doctors believe the dose I would take if I decided to take Methotrexate would be very low, but no one really knows. Since I'm only thirteen, this isn't the easiest decision to make.

Also, yesterday I experienced a very strange thing. Since I have taken so may shots, I have used a cream called Emla to numben the area where the shot will be taken (I'm 13, I'm still afraid of needles). These patches with cream stick hard to your skin, I have marks from where they have been. But yesterday I saw a red square on both of my arms, about 5x5 cm. I know they are from the patches, but I have never gotten something like this before. These red squares where hot and they itched - now I have hives on my arms. These hives hurt even more when exposed to direct sunlight (and since I'm in Crete, it's hard to avoid the sun). They still hurt when in the shadows, though.
The weirdest thing about this is that they are still there, now long over 24 hours since they appeared. I've never had hives for this long (at its most for 30 minutes). They don't hurt that much anymore, but they are still red and a little hotter than the rest of my skin. The reason they doesn't hurt as much now is probably that I've been wearing a jacket all day, which means my arms haven't been exposed to sunlight since yesterday.

If you want me to explain something even more, just ask! And hey, I salute you all who have had this for seveal years! I'm breaking down right now, and it has just been a little over a year...

Emma

[jen1981_707_]

I have suffered hives for 5 years now, recently diagnosed with autoimmune chronic urticara. I get hives that leave me swollen and unable to walk or use my hands. My hives leave bruising and last for 2 weeks at a time, once a mnth. I am one of the most severe cases studied by my dr at a hugh we'll known hospitol. I am closely monitored and take doxipen 100 mgs evey day and 100 mgs of benedryl every 6 hours when realy bad. 5 years it has been a living night mare for me, a victum of my own body. I canot go out in the sun, no hot or cold water, no exercize and definatley no shoe just flip flops. What has been the toughest moment of my life is today, finding out that my 5 year old son has this horible night mare to. I cannot see my child suffer like I have, Im so confussed by this. Ironicly my first out break was when I gave birth to him. I love my son, good thing I know all the tricks to this desease

[katielen89]

I was wondering if anyone has tried sulfazine and xyzal and gotten any relief? My doctor put me on these for autoimmune urticaria. She said the sulfazine might take a while to get into my system so it might be a bit before I see any results? Has anyone else tried this combo and what happened for you? I am sure you all feel my frustration with this disorder. I hate the feeling of hoping that the new med will work...then nothing. =[ I'm sure many of you can relate to this. ugh.
Thank you,
Katie

[zshabs]

I am 29 and my story is no different from all of you. It began in 2006 with a sudden swelling in my both feet. At that time i was an undergraduate and i just thought it was an allergy and went to see many doctors . After numerous efforts the following year i was diagnosed as having AIU. for the next couple of years i had it bad with face swelling and rash all over me until my doctor put me on cyclosprine. after that dose i got much better and felt it went away for almost six months and now i am back with the rashes but not as bad as before.
I have come to live with it. in addition i have pressure urticaria so now i know when i sit in hard benches, hold heavy stuff or even go jogging etc i get swelling and rash all the time on my fingers, feet and bum
plus just before my periods i get rashes all over my arms and tummy that go away after few days.
another trigger is emotions.
its very hard to live with this everyday, i try to be positive but somehow always feel depressed about this no matter how much i try.
can anyone tell me the deal with this new medicine xolair? does this work?

[1000poundman]

I was diagnosed with Autoimmune Urticaria recently though I had been suffering from Solar Urticaria for some years which manifested into a general urticaria (I suffer from a high antibodies attacking the thyroid) this had all been relatively easily controlled by Telfast.

Then in Jan this year I had Mycoplasma which set off an extreme reaction much the same as everybody on this blog, I also believe that high usage of Ibroprfen had a contributory factor. I had a large covering of hives over almost my entire body.

After various visists to various Dr's I have been given Prednisolone 7.5mg /Cyclosporin 75mg along with Atarax/Vitamin D and Aerius but in addition have just started on a course of Xolair 300mg per month. The Xolair initially caused a big flareup but calmed down after a day or so, the main result has been that the hives on my torso have largely gone but I am still suffering on my legs and hands. Xolair is very expensive and I am only into the second month but I would say the results are encouraging.
I now find alcohol to be difficult to cope with it seems to have a very negative effect though ironically since drastically reducing my alcohol intake I have not required the headache pills which is one less pill I have to take.

[Mamas_lil_man_has_hives808]

I'm so happy and sad at the same time that I've found this forum...I'm sorry so many of you have this problem.
My son (5 1/2 yr old) has been dealing with AU since he was 3 possibly earlier then that. His whole life he has had food sensitivity problems. Even though he was tested for food allergies and they all came out negative he still gets hives within 2 hours of being in contact with peanuts.
He has been taking 10mg of Zyrtec daily, if he misses a day he usually gets hives by the next morning. After a couple of doses of benadryl the hives typically go away. A couple weeks ago he ate one piece of shrimp (which he has eaten in the past with no problem) and broke out with hives less then 2hrs later. Benadryl did nothing for him so PCP gave him prednisone. That didn't help, we were in the ER the next night due to my sons hives worsening. It was now all over his face, once i noticed his nose was swollen we went straight to the ER. The dr at the ER gave him a few things to help relieve the itching and pain and sent us home with Atarax and Hydroxyzine. Two days later his hives still didn't seem to be getting better so his PCP had to increase the prednisone. Three days later the hives were finally disappearing. After being hive free for 9 days, the hives have returned once again. It's now been 5 days straight of hives, I've started him back on all his meds with the hopes the hives won't linger to much longer.
After reading through so many of your stories here I'm realizing that this is something that may never go away and my son with have to deal with this for the rest of his life. He is so young and has been though so much already ( AU, sleep apnea, tonsillectomy, Adenoidectomy and myringotomy all in 2010)  it breaks my heart.

Best luck to you all

[Lanzski]

I'm 39 and have felt with autoimmune uticaria for almost 20 years.  It has caused a number of falsely identified allergies to medications and food.  I get hives following any surgery and almost immediately following or peecipitating any emotionally stressful event.  I'm wondering if anyone else notices that their hives always appear bilaterally?  In other words, if it's on my left forearm, it's on my right forearm.  If it's on the inside of my left knee, it's present on the inside of my right knee.  I'm confident I finally understand this is a chronic uticaria and not allergies but I just wondered if this is indicating anything else more specific going on.  Also, has anyone tried any natural or homeopathic treatments with any success?  (ex. Juice fasting, diet modifications, supplements).  I am an otherwise healthy, physically fit woman.  Thank you for all feedback...this has been a long and miserable journey towards understanding.

[Bassiclie]

Hey! So for the past 4 months I have been fighting hives. It started when I was on an exchange semester in australia and we figured I was just allergic to something there. On the flight back home, however, I started to swell in my lips and feet. My joint started hurting and my feet became so swollen and painful I thought they were broken. Basically the worst plane trip ever. My hives all turned to bruises and I ended up having to go to the ER upon landing. I have since gone to seen and allergist and been diagnosed with autoimmune urticaria as well as hypothyroidism. I started taking prednisone and that has helped however now that we are trying to taper the prednisone down my hives have started to show up again. I really just want them to disappear because having to take so many antihistamines just makes me a zombie all the time, especially since benadryl seems to be the only thing that can help wih the hives. I see my allergist in a week. I wonder what we will try next if the hives come back full force again.

[cindylou53]

hI,IM  A 57 year old female and was diagonised with ULTRACADIA AND I DONT WISH THIS ON ANYONE ITS SO HORRIBLE AND IM ON perisone again i never had this before in  need more info on this disease i even brek out at work im reading all the posts and i dont feel alone anymore and it drives you crazy thank you

[hivealot]

I also have autoimmune urticaria for about 8 years. I have been on all the anti-histamines. I recently found an immuneologist that gave me an ana test and it was positive. He started me on plaquenil and now my ana is negative still get hives but not as bad. He is talking about allergy shots now. . I feel very sick in my body now not just the hives. I have no energy and just feel horrible. I also have joint pain. I am now on singular,zyrtec,periatin and plaquenil for hives..My doctor did an allergy test and I am allergic to everything but even if im not exposed I still get hives.  Try to keep your head up everyone I know its hard .Thanks to everyone for your stories

[Keilla]

I posted on here about six months ago on another post and am back to give an update.  This is the fourth time in my life that I've had hives.  The first 3 times, Prednisone made them go away within six months.  This time, I could not bear to stay on the Prednisone after gaining 15 lbs.  I decided to look for a homeopathic remedy since my doctor seemed to be no help at all.  My hives are still around 10 months later, BUT they are lessened about 60-80% by doing the following:
Everyday put the following herbs (I used the liquid ones found at Whole Foods) in water and drink:  Peppermint, Stinging Nettle, Lavender and Healthy Tonic Liver blend.  I can't say they are the most pleasant thing to have to take everyday, but for how much they help me - it is worth it and I'm now in the habit of taking them.  You do have to drink them 2 hours after eating and one hour before eating, plus space them 15-20 mins apart.  I've also stopped taking any of my vitamins - they seem to make the hives worse for some reason.  No ibuprofen or tylenol (I've learned to use heating pads for sore joints - and for headaches - just lay down and relax).  My other recommendations - get lots of sleep and watch what you eat.  I typically stick to organic foods - anytime I venture into the junk food world (ex, Pizza Hut) - I swell up, even on the face.  I know everyone's hives are caused by something different and mine seem to be brought on by major stress - so this may not help everyone.  General rule I've learned - just treat your body better - I truly think it's trying to tell you something.  Here's the site I pulled the herb information from:http://www.optiderma.com/en/skin-disorders/skin-disorders-a-z/urticaria-remedies.html
Oh - and for when the hives irritate me anyway - I use the benadryl liquid stick that you can carry everywhere with you.  At home, I used Cortisone or Gold Bond Medicated itch cream - true life savers in my opinion.
Good luck everyone - I know this is one of the worst things in life to have to deal with.

[kimbo1220]

Hey everyone.
I had chronic hives from the 8th grade to my sophomore year in college I was on a cocktail of meds. Most of the meds made it tolerable but they didn’t make the hives go away. My eyes and lips would swell; I had them on my hands and bottoms of my feet, in my scalp. Sometimes I would wheeze and I would feel like there was a golf ball in my throat when I swallowed. I started out on Benadryl, then on to Allegra, Claritin, zyrtec hydroxizine, dyphenhydromine and so on. I was talking up to 15 pills a day and still could sleep thru the night without itching all over my body. Prednisone was the only drug that worked for me but my doctors always thought that it would stop the hives for good however when it ran out they ALWAYS came back. So of course I began hoarding my meds and taking them according to my schedule. I was seeing a specialist in Charleston, SC who finally gave me the Prednisone on a regular basis and by the time I graduated high school I was 260 lbs they all of the sudden went away my second year in college. They just stopped and I haven’t had a hive in 5 years. And I’m at 120 LBS NOW and I didn’t even try to lose weight!. IF nothing is working for you I would suggest prednisone it’s hard being obese especially in high school but it’s even harder living with this condition. Keep the faith it’s not going to last forever! Although its hell when u have to live that way. I only wish I knew why they started and why they stopped.

[mollyde58]

  i have internal hives its the worst thing in the world to me this is the 3 rd time i have them in 20 yrs n the worst i tested with hi scores for autoimmune urticaria/angioedema at least i know what it is now i have no outer signes of my disease it causes my throat to swell my sinuses swell so much i have had numb spots on my head for months the itch is awful it starts in my eyes n ears n nose it gets so intense that i t feels like a million bee stings that goes down my spine n in my brain my coochie n booty itch too been on steroids for a mounth  was on 1 24 hour allegra n 6 24 hour zyrtec a day ended up in er. with blood presser attack im on atarax now tried to add singulair think it made it worse they thaught antidepressent would b good ended up bk. in er. pucking crapping shaking n sweatting after taking 1 pill o ya flonase seems to help sinus swelling  i c all the posts about hives u can see any one have this kind?

[gunj24]

I m 31 yrs old and having autoimmune chronic urticaria and i  m on zyrtec but because of the regular use of zyrtec i m having issues with my sinuses ....i m suffering from sinus infections ...which is the best medication which i can use for urticaria...please suggest.
Thanks
***@****

[AZMamaof2]

I am Mom to an 11 year old with chronic hives.  The doctor cannot determine the cause.  We are getting no relief from zyrtec, allegra, zyzal, zantac, hydroxyzine, singulair, benedryl or doxepin.  I am at my wits end and my daughter is miserable.  The hives started around mid May this year and are still continuing.  No matter what drugs she takes, the hives still appear daily in varying degrees.  They get worse in the pool or when she has volleyball or basketball practice at school.  She has been scratch tested and she is allergic to grass and several weeds and shrubs, pork, sweet potato, yeast and oat.  We have completely cut out the foods she is allergic to and she still gets hives.  She has been seeing an allergist.  Should I take her to a different type of doctor?  Someone has to be able to determine the cause of this.  Finally, the allergist ordered a blood panel for auto immune conditions.  If anyone has any suggestions, I would love to hear them.

[Sfas22]

I have had hives for 4 and a half years now. I've tried zrytec,  claritn, allegra, Zantac, levocetrizine, xolair injections and the immuno suppressant cyclosporine most recently. Xolair worked for a week and then quit working, and so did the cyclosporine. I'm so miserable and itchy, and desperate to find some kind of relief. The hives are so bad lately I find myself taking 8 zrytec a day, on top of my prescription antihistamines, zantac, cyclosporine and the xolair injections. I'm desperate to find something that works

[Chappus]

Has anyone ever had their hormones tested?  Do you think that a hormonal imbalance could be a cause?  It just seems strange to me that this is happening to mostly women in periods of their life where female hormones ta  I too have this affliction and will go into detail at a later date.

[Yoyomasterpups]

Ive had this for 8 months now and like most of you, tried a lot of drug combinations. While Im glad to have found this forum, it's also kind of depressing  to know that there's not much success stories here. =( Yes, prednisone does work but is really not advisable to take long term. One thing that no one has mentioned yet is INTRAMUSCULAR IMMUNOGLOBULIN or IMIG shots. My allergologist, after trying all sorts of oral drug combinations (loratadine, fexofenadine, hydroxizine, zyrtec, ebastine, etc), told me our last resort is to inject IMIG shots once a month. On the 1st month, the hives are still there so I still need to take Desloratadine 20mg once a day. Dr said the IMIG shot usually works on the 2nd-3rd month. After the 2nd shot, there was a slight improvement. The hives only appear very late at night, though I still need to take Desloratadine when it appears. The itch is more tolerable though and it is gone after i take Deslo. I had my 3rd shot last week and the day after I have no attack (not sure though if my being in another country that day is a factor). I thought it would continue but the hives are back =( I have my period now, though, so I guess it really is worse during menstruation. My hives can be controlled by Desloratadine but I really want to be drug-free one day.

PS. I can't wait to get pregnant after reading most of you were off the hives during pregnancy!

[Lorraine1969]

I'm 41 years old and I've had chronic idiopathic autoimmune urticaria for 24 years give or take a few months at a time. I always knew it was urticaria but was diagnosed as auto-immune urticaria 2 years ago by a specialist, he gave me a new prescription, 3 Telfast per day, 1 Singulair at night and 1 Hayleve at night, this worked for a while but I still have occasional episodes, the specialist said when it flares up it would usually be due to stress or emotions which is fairly accurate.  I am having a bad episode at the minute and trying to explain to people what it is can be so frustrating, they are always trying to guess what is causing it and now I just say 'do you know what idiopathic means??'  
If you are, like me, tortured first thing in the morning it's good to take a really hot shower and then use Vaseline Intensive Moisturiser containing Aloe, it seems to calm things down for a bit, worth trying for a bit of relief.
It's a very debilitating disease and has me demented, joint pain is another side effect which is annoying, paracetamol is good for this but Diclofenac is a stronger tablet for really bad days.

[GA_Gal]

I am 46 and have battled hives for many years. The condition has progressively worsened. There are obvious triggers to the episodes and it is harder and takes longer to settle things back down.  With this last episode (triggered by some bug bite), I started experiencing joint pain.  I have a doctor's appt in a little over a week. I currently take Allegra 180 x 2 daily and Atarax at bed time and during the night. Itching is worse at night. I also have some vitiligo. Symptoms are worse around my periods. So afraid of what might trigger an episode.  A flu shot triggered huge hives several years ago, so I do not take vaccinations any longer. Heck, it has been years since I had a cold. I have never had the flu, so I guess it doesn't really matter.  I'm afraid of the new symptom of joint pain. It is interfering with my life!

[Ruthiesmom]

We have had hives for 4 years and feel we too are wanting more answers and more help! We loved Plaquenyl, but now it's not working so we are trying Sulfasalazine. I just read an article that a man started at 500 mg and then increased it o 3 g per day...his blood work was good, so they kept him at 3g.  We are on 500 mg  2 times per day and not getting enough relief....I may be starting a support group, i hope so, everyone needs it!

[Josiesmom2011]

Has anyone noticed that different clothing makes the problem worse? 2% spandex seems to trigger it for me and twill cotton-anything with even the slightest "fuzzy" feel.  All of my pants have to be the lined kind or feel like cotton percale (like bedsheets) with a smooth finish.
Also, chemicals-chlorine or any derivitve.  All I have to do is smell it and my lips start to tingle and then my tongue starts to feel "scalded", then finally the hives will start. According to the allergist the only "real" allergy I have is to dust mites, although he did find the Hashimoto's that the GP missed.  Benadryl at night helps and then I can function the next day but the hives are always there just waiting for me to trigger them somehow.  Feels like sunburn and I get cold chills like fever.  Usually by the time I leave work, I have some hives because the air system is treated with Bromine (worse than chlorine).  That is what I tend to blame in conjunction with the Hashimoto's-it is like the perfect storm.  And has been since 2007....

[Yankeebabe72]

Hello everyone,
I am 39 years old and have been dealing with CIU for almost a year now. Nexium has been the suspected cause of this lovely disease for me but I'm not sure it was. Truth be told I really don't care what the cause, I would just like for the hives to go away and never bother me again. During the onset I was dealing with a lot of stress. Christmas, my husband coming home from Iraq, my first semester of Radiography program, my son coming to visit, and of course money issues. So I thought maybe that was the case but almost a year later, no relief. The only thing that completely clears them up is steriods but after gaining 30 pounds, no more for me. I was an active person, always in the gym, riding my bike, going for walks,etc etc but now all those activites cause the hives to get worse. I cannot even clean the house or wash my car without having a breakout and joint pain. I am hypothyroid secondary to Graves Disease and my allergist seems to think this is the cause. I have seen 2 different endocrinologist and still no answers. I go back next week for a ultrsound on my thyroid, I hate to be negative but Im not getting my hopes up. I swallow pills on a daily basis that have no effect at all. Sure I get a little relief but I guess I'm selfish because I just want them to go away! I am in a drug study now for Xolair but I guess I got the placebo because I had my 2nd set of injections last week and the hives seem to be worse instead of better. Just my luck! I will be 40 years old in May and have told my husband many times I will not live the rest of my life fighting these hives! I am at the end of my rope. I have no hope these things will go away and as I read the stories of the people who have been fighting this disease for years and years it hurts my heart ! It's hard for me to have any positive thoughts because this disease has taken control of my life! well I hope you will all find your cure !

[Hiver]

There is some hope. I last posted in November, 2010.  I posted then that after 5 years of hell with CIU my outbreaks were getting less frequent. Prior to then I was rarely without hives and the living hell that goes with them. I also was on quite a cocktail of drugs, including prednisone every other day.  Prednisone seemed to be the only thing that controlled my hives.  Since then my hives gotten much better.  I still get them but it is much less often and less severe.  I have been off of prednisone since September (after about 3 years on it) and have also stopped taking Singulair.  I'm still on fexofenidine and ranitadine 2x each/day but I plan on starting to cut back on those too after the holidays.  My outbreaks now are about every 3-4 weeks and only last a few days.  I'm not cured but it's definetly MUCH better and I can function.  I feel bad for all of you as I know what's it like to have them almost constantly and  feel helpless.  The other hard part was that I don't personally know anyone else with this disease to talk to.  This forum is nice for that.  So, do the best you can and hang on.  Hopefully they'll  recede or go away as mysteriously as they came.

[SarahPickles]

I have had autoimmune urticaria, angioedema and anaphylaxsis for over five years.  I have been on Doxepin, Xyrtec, Ranitidine, Claritin, etc.  I went from having one to two outbreaks a month to having them every day, including severe swelling outside as well as in, along with many, many trips to the ER and shots of Epi.

I am a 34 year old woman with two little girls.  During my second pregnancy, I was given a PICC line in order to give myself IV injections of Benadryl every four hours so I wouldn't go into anaphylaxsis.  Four months after I gave birth, I had a complete hysterectomy as I tested positive for a severe progesterone allergy.  One month later I relapsed completely and the PICC line was placed back in some months later.

Three immunosuppressants later and I am on a cocktail of Azathioprine, Prednisone, Xyrtec, Ranitidine and Benadryl.  Luckily my PICC line worked its way out of my arm last Friday and had to be pulled.  Unluckily, I am covered completely in hives without my IV Benadryl and sweating my *** off.  I run a fever when the hives appear.  Tylenol and cold showers help.  Creams are a joke.  Nothing helps deep tissue hives.  I get large painful swellings on the soles of my feet that itch.

My body *****. And I hate it.  At times I completely hate myself.  And then I look at my children and forget.  They are beautiful.  Both girls.  I love them.  I don't want them to see me like this.  They will never know me as healthy.  My husband remembers and it breaks my heart for him to see me this way.  This is not what was planned.  It never is, is it?

Glad to meet you.

[NorCalKells]

Wow, I had no idea so many people have had to go through the same thing I've had over the past 4 years.  Some of your stories are so similar!  I got my first hive 6 months before my wedding.  Everyone wrote it off as an allergic reaction to a bug bite or something I ate, or stress.  When regular antihistamines didn't work, they put me on prednisone.  Relief was very temporary.  Had to make lots of trips to the emergency room.  I gained 20 pounds in two months.    I even had to buy a new wedding dress to fit my water-bloated body!  At any rate, UCSF finally did a test looking for the antibodies in my blood that attack the Mast cells.  And FINALLY they put me on a mix of autoimmune surpressors, the main ones being Hydroxychloriquine and/or Plaquinel.    

My allergist didn't want to put me on these at first because they are toxic medicines, but I wish they had put me on them RIGHT away once they realized this was a chronic problem.  There was a lot of suffering that could have been prevented.  Thanks to these drugs, I was able to get off the steriods, and life slowly got back to normal.  I did quit graduate school and moved with my husband back to his very rural, low stress hometown.  Over the last couple years, I've been able to get completely off the auto-immune suppressors and maintain on high doses of Zyrtec (ceterizine = active ingredient), which I am pretty much stuck on for life now, but oh well.  I still start to get minor flare ups of swelling or hives, and I get lots of internal itching in my ears and throat if I skip the allergy medicine or have an especially stressful day, but if I take 20 mg of the zyrtec right away, I'm usually fine.  I try to take a min. of 20 mg a min. of once a day, usually before bed, but sometimes I need to take more.  

I'm hoping I can keep maintaining on this stuff for the rest of my life, fingers crossed.   Although they never found an imbalance with my thyroid, I have it checked frequently since there's a definite possibility it will have issues later on in life.  Both my mom and grandmother have a thyroid problem.  Although ACIU might not be caused by anything, there are certainly things that will trigger flare ups, so avoid the following:  ALCOHOL, CAFFEINE, STRESS, ILLNESS, (if your a lady, you might get flare ups right before your period, so stay on top of your meds beforehand to help avoid it), TIGHT CLOTHES, MAJOR CHANGES IN TEMP, DEHYDRATION.  Also, be aware that you are more likely to develop eczema.  Anithistamines dry you out A LOT.  So always use an in-shower lotion everyday if possible and avoid really hot hot baths (I know, ***** : (  

Good to know, WE ARE NOT ALONE!

I do have one question...my husband I eventually want to have a kid.  Has anyone had this disorder BEFORE they had kids?  What happened to you when you did?  I'm scared of what might happen...

[NorCalKells]

I forgot to add, avoid pain killers or blood thinners.  Ibuprofen triggers a flare up for me EVERYTIME.  Within 24 hrs I have what I like to call "duck lips" which is the swelling in my lips or somtimes my eyes.  

To anyone reading these comments, do not try and just let this resolve itself!  Get on something to suppress your auto-immune system RIGHT AWAY. The sooner you can calm your over-active system back down, the sooner you can wean off the suppressors and maintain on something more mild, like histamines, good diet and sleep, and avoiding the things I mentioned above and in my previous post.  Just know, you are not crazy!  You need to have a doctor that specializes in auto-immune disorders help you out.  Good luck to everyone dealing with this, there is light at the end of the tunnel!  I promise.  

One other thing, if you ARE taking auto immune suppressors or prednisone, ALWAYS eat something substantial with them!   I was not always good about doing that and ended up in the hospital with an ulcer and major stomach problems.  I hated having to always eat something, even in the middle of the night, if I had to wake up and take a pill, but just do it.  Your stomach is delicate and needs that buffer with these stronger medicines.  Trust me!

[NorCalKells]

There IS hope, I promise!  The first year is the worst, in my opinion.  Get on some auto-immune suppressors right away.  The stress in your life is probably what initially triggered it, but now that your immune system is over-acting, it's not going to stop unless you take something to calm it back down.  Most likely it would be Hydroxychloriquine or Plaquinel.  They'll probably keep you on prednisone too until these can build up in your system (about a month or so).  Then you should be able to wean off the prednisone.  Maybe ask them to switch you to methylprednisone a well.  You can get the same results with a smaller dose (4 mg to every 10 mg of prednisone, I believe).   I wouldn't mess around with a bunch of studies or experiments.  It's actually pretty simple - autoimmune system overreacting an attacking your Mast cells.  Suppress the immune system, no more antibodies getting sent out and attacking your cells.  Immune system gives a sigh of relief, and you can get back to normal enough to maintain on some kind of histamine regiment (I recommend Zyrtec, or any allergy medicine with the active ingredient ceterizine.  Take up to 20 mg a day if you need to.)  Also, avoid:  caffeine, blood thinners, alcohol, tight clothes, lots of stress.  Basically stuff that you know is probably not that good for you anyways.  You don't want to put anything in your body foreign enough to put your auto-immune system into overdrive again.  Good luck, I promise you, if you're able to do these things, a couple years from now you will be feeling SO much better.  

[NorCalKells]

Hey there, have they tried the auto-immune suppressors hydroxychloroquine or Plaquinel yet?  They are kind of general auto-immune suppressors.  A lot of people take them for asthma and arthritis.  They worked for me, I suggest at least asking your doctor about them.  This mixed with a very low dose of methylprednisone and a good allergy med (I recommend 20 mg of zyrtec (ceterizine) a day), and you'll probably be able to wean off most of them and maintain on the allergy stuff within a couple years I would think.  Oh yeah, and avoid the good bad stuff, like caffeine, alcohol, pain medicines, tight clothes, etc.  They only work against you.  

[zbara]

I am a 50- year old woman and have had chronic idiopathic angioedema (and its traveling companion, uticaria) for 7 years. As explained to me, it was caused by exposure to viruses and a very overactive immune system. The upside - no colds or flu - the downside - swellings all over my body that are extremely disfiguring and uncomfortable. I have been in the emergency room a few times as my throat has gotten swollen. Always the treatment for acute symptoms is a huge dose of Prednisone. I maintain with Zyrtec, which seems to be doing its job, mostly. I no longer take Prednisone, the side effects are just too unpleasant, so now when I get a flare up, I just ride it out.

I have now recently been diagnosed with gastritis and stomach polyps and an association w/ immune disorders was mentioned (although Prednisone may have contributed). Does anyone know about this association?

[sasakemi]

I have had chronic hives for 6 years.  Mine respond in autoimmune fashion, and I also have autoimmune hypothyroidism.  There is a definite connection between the two, and if you have one autoimmune disease, you are open to others.  Many have coeliac's disease as well or are gluten intolerant, so avoiding wheat,etc, makes sense for those who respond well to limiting those foods.  My hives are manageable now but I am on 75 mcg Cytomel per day, synthroid and its derivatives did not help at all, and I also take off label doses of Zyrtec and sometimes Zantac.  I am concerned that one day, these will not work for me.  Only my allergist was up to date on what was going on; I had tried to convince my regular doctor but she didn't believe me when I told her I had read papers linking the conditions of hives and hypothyroidism.  The allergist knew right away, which was such a relief not to be looked at like a kook for suggesting they were related!

[Robertta]

Hi from Finland,
i've have had Urticaria for 17 years now. First six years several doctors were looking for allergi, which didn't found. Year 2000 i had very bad season with angiodema swelling alla over, specially my face and i luckyly met the lady doctor who asked if i was tested for autoimmune uc. Then the test was made and it gave me all the ten points.

Well it helpes a little to know how these helvetic symtoms (symptoms) work, but there is still no cure for our skin-disease.
Then i got very strong medicines: SANDIMMUN, for 4 months, but it needed to stop because of side-effects.

After SANDIMMUN i haven't swelled up anymore, but hives are going on about twice in a year, lasting about 2-3months. When itching is very bad i need to take ATARAX, which make me very very sleepy, and cause me lot of absences from work. Horrible times, but i need to sleep properly.

Few years ago i also got an astma. Not the bad one, but need to inhale BUDESONID every evening.

I use XYZAL for miner itching, but i don't know if it's really works.

Nice to meet you all  :)  

Here in Northern Countries this is not very well know symtom.

[macaem]

I have had this since I was 13 and I am now 30. They didn't even know what it was until I was 23. I have taken Plaquenil and it worked great for about 3 years then it stopped working. I was then put on Cyclosporine and after about 3 years it stopped working. Now I am constantly on Predisone because they keep trying to figure something else out but I have been on that for 6 months and have gained so much weight. I noticed that I never had this until I started my menstrual cycle and then when I got pregnant it went away comletely with both of my kids and then after about 3 months it came back really bad. There has t be something better out there.

[Mdem302]

Hi. For one week now my 9 year old has been breaking out in hives. They usually appear when he wakes up, before he's even out of bed, and then disappear within20 minutes. Then throughout the day he'll get a hive here and there but nothing awful. But after dinner he'll break out bad. Last night he didn't though only a few after dinner. Then this morning maybe two really small hives and then none all day.  At dinner tonight he broke out the worst he ever has and the hives have been coming and going for two hours now. These are the worst I've seen on him. His whole ran was covered and then he da patches on his back and belly. I gave him benadryl and an hour later they are ... Almost gone ...  
What should I do?  Is the first step an allergist?  
When he was little he would get hives often at night after a bath but he hasn't in a few years.  
Any advice would be so appreciated.
Very worried

[jacksmom005]

My son was just diagnosed. We had no idea that this many people were affected. He breaks out very time he gets any other illness, which is pretty often. We are at a loss for what to do to help him. He is 22 months now & has been taking singulair & zertec for months with little relief.

[skineddie]

I developed a severe case of hives eleven years ago.  I had a traumatic experience the previous year, and was quite run down, so I got a vitamin B-12 shot from a naturepathic Dr.  Wham! severe hives, head to toe ensued.  A three week course of prednisone, combined with Zyrtec and Ranitidene helped get them under control (DO wean yourself off the steroids slowly).  For about a year, the Zyrtec and Ranitidene  kept the hives under control, for the most part and then...they were no longer an issue!  I was overjoyed!  Several years later, my sister and I both developed unsightly (excema?) rashes on our arms and legs.  Through testing, we discovered we were both allergic to gluten, dairy and nightshade vegetables (potatoes, bell peppers, tomatoes, eggplant...)
Eliminating those items helped. This post is too long...so I'll do another.

I

[skineddie]

I developed a severe case of hives eleven years ago.  I had a traumatic experience the previous year, and was quite run down, so I got a vitamin B-12 shot from a naturepathic Dr.  Wham! severe hives, head to toe ensued.  A three week course of prednisone, combined with Zyrtec and Ranitidene helped get them under control (DO wean yourself off the steroids slowly).  For about a year, the Zyrtec and Ranitidene  kept the hives under control, for the most part and then...they were no longer an issue!  I was overjoyed!  Several years later, my sister and I both developed unsightly (excema?) rashes on our arms and legs.  Through testing, we discovered we were both allergic to gluten, dairy and nightshade vegetables (potatoes, bell peppers, tomatoes, eggplant...)
Eliminating those items helped. This post is too long...so I'll do another.

I

[skineddie]

I ran out of space in my previous blog...but am curious about several things.  Do many of you sleep on memory foam mattresses or toppers??  I know hives and respiratory problems can be triggered by off-gassing of new memory foam products.  We got our Tempurpedic mattress about the time my hives started.  I now am also allergic to petroleum products (mascara, mineral oil, etc. etc.) I read an article that stated I am sleeping on a "sea of petroleum" and my mattress will just continue to off-gas.   Also...we are working hard to eliminate mold from our front loading washer (monthly treatments) and damp areas of our basement...as a naturepathic Dr. who treats cancer patients told us mold can wreak havoc on the immune system.  In the damp Northwest, I even treat my car for mold every two weeks now!  I've been lax on the mold elimination...and a recent cold ushered in another case of hives.  I am motivated to eliminate as many allergens as possible..and may get a natural Talalay rubber mattress with a wool topper (from someplace like "Lifekind")  With a Dr.'s prescription, you can have them skip the fire retardant normally required .  I pray each of you will find answers, and good health!

[daffy1711]

I have autoimmune chronic hives.  Also have chills with flu-like symptoms.
Asked the Dr. (Allergist/Immunologist) about this and he had never had a patient that had these symptoms.  Back of my head will feel sore to the touch when I'm having a bad break out.  Started 6 mos. ago.