Just wanted to let my new community of friends know that I had a really crappy day and need some 'renewed spirit' if anyone has some to give!  Went to see my Rheumatologist today who literally threw his hands up and said, 'I don't know what you want me to do for you...'  After going to 3 specialist at his request to determine why I've suddenly developed hives and all of them directing me back to him to treat my existing autoimmune flare up (dermatamyositis), he sits before me and says I'm not showing the typical signs of a flare up so he doesn't know what to treat me for!  Fatigue, muscle weakness, "mechanics hands", red knees and elbows, purplish eyelids... all the symptoms of dermatamyositis.. only other time I felt like I do know (without having hives) was 10 years ago when a Rheumatologist in Atlanta diagnosed me and started me on prednisone and methotrexate.  Now this doctor says - not DM, not sure what, don't know what to do!!  *******!!!! (Sorry if I offended any of you)...  My only recourse is to start all over with my PCP and find another rheumatologist, go through all the history and see if they will start some type of treatment.  On 20mg of prednisone now, but it's not helping with the fatigue and muscle weakness.  When asked about getting started on methotrexate today, he said "you do that to get off the prednisone and it's a long term treatment drug, not short term... but since you're not showing the signs of an autoimmune disease flare up, it would be a waste of time to start that now."  His answer is go back to 40mg pred/day, get more blood drawn and see him in 2 weeks.  WHATEVER!!!

Hi, I saw your post and wanted to say your experience with onset of chronic hives sounds exactly like mine.  Got strep throat, a nasty case, went to the doctor, got a script for antibiotics.  Felt worse after taking the antibiotics for a few days, but I understood that strep releases toxins when the antibiotics start to work so you can feel worse before you feel better.

After 5 days on the antibiotics and just beginning to feel better, one day, with no warning, I began to get hives. I mean huge, irregular shaped hives the size of my hand.  And then I began to get smaller hives on top of those  hives.  On my hands, stomach, neck, thighs, buttocks, ankles, tops of my feet.  Thankfully the hives never erupted fully on my face, though I was very itchy and my lips felt swollen and tingled.

I was absolutely in misery and after two days I called my husband sobbing and said he had to come home and take my to the doctor because I was in misery day and night and even large doses of over the counter of Benadryl, etc were NOT working at all.  Even the doctor was shocked when he saw me.  Huge red hives, hives on top of hives, and bruises where older hives had started to go down.  He said it was the worst case of hives he had ever seen and started me on prescription antihistamines and also steroids.  

It gave me some relief.  At least I could sleep again.  But every morning after getting up, I would have a new flare-up.  I know the docs say NOT to take a hot bath or shower with hives, but with me it did give me a bit of relief.  And the meds did help control the hives a bit.  I noticed I especially got hives from my jeans rubbing on my ankles and feet, from the waist band of my pants, from the band of my bra, etc.  And with me cold would REALLY send me into  big flare up despite the meds I was taking.

I am telling you this and anyone else out there who is reading this who is suffering from chronic hives that there IS hope.  After about 3 months, my hives settled down to only flaring up in the late afternoon, and only when I was exposed to cold.  After about a year, the daily flareups stopped gradually until only cold would cause the hives to flare.  Winter air, and also air conditioning would cause a mild flare up.  About two years after that, I was able to tolerate more cold air as long as I took a dose of prescription antihistamine and took a warm shower as soon as I came inside.  By then I was able to stop taking the prescription meds on a daily basis and could take over the counter meds before hand to prevent a flare-up.

It has been almost 8 years now and while I do have the occassional very mild flare-up in isolated areas, like if I wear socks that are too tight, or have a waist band that is too tight, or I don't protect my skin enough from cold with scarf gloves, knee socks,  or if something is rubbing my skin like a purse strap.  I have been able to discontinue the over the counter meds as long as I dress warmly.  It seems like once the worst of my hives subsided, it was pressure on my skin and especially cold that triggered my hives.

I also think it was a immune response in my case.  And I also think accepting the hives, and not being in a panic about them, and talking about them with other people who suffer from them for support helped also. As well as having a good doctor who was able to do tests and put my mind at ease that the hives were not symptoms of something more serious like lupus, etc.   think the more we get stressed out over our hives the more they may flare up.  

I wish you the best and hope the meds can bring you some relief.  And time seems to be the best medicine for chronic hives.  They may not ever go away totally, but in many cases they do get less severe and more manageable over time.  So remember things do get better.  Best wishes.  Laurie

Hi - never thought I'd resort to something like this online but then again, never thought I'd have this sort of an illness - so there you go.  

I'm 41, female, and have been diagnosed by a Prof in Immunology with Idiopathic Autoimmune Chronic Urticaria.  I've suffered from 'swellings' for the past 20 years on and off.  I go through periods of not having it for a few months and then I might get it every day.  In the past 7 years I've suffered 5 anaphylaxis attacks where my tongue has swelled and I've needed adrenalin and a course of prednisolone.  I HATE prednisolone (even though I will admit it does save lives).  It makes me depressed, anxious and just not myself.

I take a combination of two antihistamines each night which seems to have controlled my swellings but last week I had a nasty anaphylaxis (is there a good one??) and I was on the antihistamines so they are not doing their job anymore.  My doctor has put me on a new medication with the antihistamines now called Singulair.  I'm taking both but it's early days.

I'd love to hear medication success stories.  Is there anyone out there on Singulair and antihistamines who's had success?  My aim at the moment is to avoid being on prenisolone long term and to avoid anaphylaxis :)

I've had the swelling /hives/ blisters since about 2000 about once a month but had about a 1 1/2 year respite til about a month ago. I just now watched the mini-film "Fat, Sick & Nearly dead" and it was a real eye-opener!  Especially if you want to get off all meds & feel healthier than you ever have!  
May you find health & happiness!
Holly ******

Hello Patti300,
I saw your post from 11 days ago and I know you're frustrated.  It is very, very frustrating to have your body having dis-ease and you not knowing how to help it.  I've had these hives since 2000 but this weekend I saw a film called "fat, sick & almost dead" and have been very inspired by the men in the documentary.  You should check it out.  It will give you hope.  The commercials are irritating but it's worth it!  http://www.hulu.com/watch/289122/#

Re: Your Jun 20, 10 post
Carrying grocery bags gets me all the time!!  What a relief to know I'm not alone!!!  Alcohol also!  So much about your post was exactly like my problem too except that chocolate is okay for me! (Thank YHVH!!)  

To all you others:  So good to read your posts!  Thank you all for sharing.  

I am going to vent with everyone here since noone I know is suffering with Hives.  I was normal up to March 2012 after I took Levequin an antibiotic.  Like everyone else here, its chronic hives since its already past 6 weeks. My allergist says prednisone is not good for you so he prescribed Plaquinil 200mg once a day. So far its worked for me along with Allegra and Zyrtec.  My eye test came back normal.  Right now I feel good with a few hives but not bad. It's tolerable I just don't want to be on med's for the rest of my life -I want back to normal. Oh, I am loosing my hair with this medication so I'm thinking I should stop this medicine but I'm scared.

So sorry to hear that you are having to deal with this problem now.  It is so frustrating.  I found great hope in the short film "Fat, Sick & Nearly Dead" about an Australian man who has hives all the time and his meds caused him to gain a lot of weight so he went on a juice fast for a while and was cured of his hives & was able to eventually come completely off all meds.  There is hope but not from doctors.  Here is the link to the film:
http://www.hulu.com/watch/289122/#
The commercials are irritating but it's worth it in the end.
Good luck to you and may you be healed in the name of Yahshua!
Holly

hello, this will be brief, but yes, the firstbthings yjat happen to me before the hives are chill cramping and joint aches.

Since my last post on Jul 4, 2012, I was introduced to the following article on Tumeric/ Curcumin:

http://www.****.com/genpage.php?tname=foodspice&dbid=78

I bought some tumeric and began taking about a teaspoon of it dry each day.  After a week I could tell the difference.  Grocery bags no longer caused a break-out and wine didn't cause a problem either.  I am very optimistic that this could be the cure for what ails me!  No longer will I have to suffer with these disgusting, painful, inconvenient swelling and blisters!

I would be very interested to hear how you are going on the singulair shellann as I have recently started taking it and have had a miraculous improvement though it is only 10 days so we will see.

I have been reading this web site for a couple of years now, but this is the first time I have contributed. I am a 59 year old woman and was first diagnosed with autoimmune urticaria in 2001.  After a few miserable weeks and a number of medications, plaquenil eventually controlled the condition and when I stopped the plaquenil after 12 months the urticaria did not return for several years.

The urticaria eventually returned in 2007. It was once again controlled by plaquenil.  I stayed on the plaquenil for 2 years this time, and when I stopped the plaquenil I was once again sympton free.

Unfortunately the reprieve from the condition did not last long and it started up again about 12 months later. This was at the end of 2009.  It has continued since then despite various medications, and I have not been symptom free for more than a few days over the last 3 years.  Plaquenil did not work this time.  I have been on methotrexate and cyclosporine, both of which ultimately failed to conrol the urticaria and both of which had troublesome side effects.  I tried dapsone, but had to stop after a couple of weeks as it gave me a dreadful headache.  I have been on large doses of antihistamines most of the time and taken prednisone when the condition has been bad.  For the last 12 months I have taken prednisone daily in varying doses.

Recently my doctor suggested I try xolair injections which he hoped would be very successful.  In Australia xolair is approved for severe asthma but not for urticaria and this meant that I had to pay from one pharmacist $649 and from another $499 for a single injection.  The injections helped for a few days only, certainly not to the extent my doctor had hoped.

I had a holiday in Europe for 5 weeks from late August this year. I had my second xolair injection in Italy which was quite an exercise as I had to keep it refrigerated for a week while travelling before my appointment with an English speaking doctor I had arranged before my departure. While in Europe we spent some time in very hot climates and a week before we returned home I developed the most ghastly rash which started on my arms and then spread to my legs (which ended up bright purple on the shins).  Despite taking quite high doses of prednisone and antihistamines and using hyrocortisone cream, I was almost driven insane with itching.  The rash was different to the urticaria rash but I then developed urticaria on top of the other rash.  It got worse and worse and I was really worried that I would end up in hospital overseas. Fortunately I made it home without this happening.  

When I returned my doctor increased my prednisone dose to 50mgs plus 3 zyrtec and 100mg ranitidine, but I still got worse and the rash spread to my face and other parts of my body. Four days after I returned from overseas I woke up with swelling of my face and throat so I got my husband to take me to emergency at the hospital.  The hospital doctor was satisfied that I did not need emergency treatment but he rang my immunologist who asked him to admit me to hospital and I spent 4 days there.  I had skin biopsies, a CT scan, blood tests and urine tests.  I have also had a colonoscopy since discharge.  Apparently a rash can be caused by a tumour and my doctor wanted to exclude this possibility.  Fortunately the test results have excluded the nasty possibilities so it seems it is just my immune system going crazy and my doctor thinks I have had a reaction to some prescribed medication which I have now stopped.

My rashes improved with the higher doses of prednisone but I was still very itchy and it got worse again as I reduced the prednisone dose.  I was quite distressed with the itching which had continued for over a month. I rang my doctor who suggested I try singulair and I can't believe how successful it has been. From being really itchy every day for over a month (despite all the medication) I have been syptom (symptom) free for 10 days now. I am still taking zyrtec, ranitidine and prednisone (now 15mgs) so will see how it goes as I reduce the prednisone further. I really hope this is going to be a solution for me as I am so frustrated by this ongoing saga of my health.

I have experienced most of the things that others talk about.  Hot weather is a nightmare. I often wake with puffy eyes. Tight clothing and underwired bras bring on delayed pressure urticaria.  Scratching my skin, however gently, causes unsightly dermagraphism.  I have had lots of chest pain, resulting on two occasions in visits to emergency to check out my heart - I think the problem has been swelling in my oesophagus which I understand can be affected by urticaria. Had an endoscopy last year but the gastoenterologist said he could see nothing that would explain the chest pain. Saw a cardiologist this year and he said my heart is healthy. I often feel so fatigued and vaguely unwell - not sure whether this is the condition or the medication, or maybe both. I have to have blood tests every few weeks. I am forever going to doctors. Fortunately I feel blessed to have a really understanding and sympathetic immunologist looking after me.

I find it very frustrating that people who do not have this condition cannot appreciate what it is like. I often think that others believe I am making a fuss over nothing and that I am just a hypochondriac. I recently saw the film "Sick, Fat and Nearly Dead" and found it very inspiring, though I don't think I can be disciplined enough to do the juice diet.  I will try, however, to be really conscious of what I eat and drink.  I think my diet is quite good but I do have a weakness for sweet things so will try to limit these.

Oh well, enough of a rant for now.  But I do find it very comforting to hear from other suffers out there and know that I am not alone.

HEY...i went for years wondering how to stop the urticaria; hive. Asthma, induced by change of weather, stress, you name it. so I call a homeopathy doctor...got on a series of b-complex w/ b-12 and a loratadine dissolvable from rite aid. for about 15 for the box of 60 and $5 dollars for the vitamins. I have not been to the doctor in a year. on occasion i get the pain all over but a red exedrin caplet and some caffeine usualy clears it up. good luck hope this helps!

I have had chronic idopathic urticaria for 6 years now.   I developed hives - giant wheals - and had to keep taking prednisone, every time I went off of the prednisone they come back, eventually my immunologist/allergist put me on singular, doxepin & reactine.  The hives went away after a year or so.  Now they have come back since before summer, and there is not a day I do not have them.  The medication only partially works now (singular, doxepin, reactine). I get them from pressure, friction, any kind of minor skin trauma or stress, I flare.  It is very debilitating, as I get them all over my hands/feet/body I am unable to work out when they are really bad, and I have gained about 45 pounds :( I am a very active person & I work out almost every day.  When I am having a severe flare, it makes me feel like I am going crazy with the severe itch & pain.  I miss work a lot & people just don't get that it is NOT an allergy.

Singulair didn't turn out to be the miracle cure I was hoping it would be (see my post from 4 November).  When my prednisone dose got down to 10mgs the urticaria began to reappear. At 5mg it was quite bad.  Saw the immunologist yesterday and I am back to 7mg prednisone plus singulair, telfast, zantac (ranitidine) and now since yesterday also sinequan which is an old antidepressant and also an H3 receptor blocker. Had an itchy night and this morning I had swollen eyelids (happens most mornings lately) and urticaria on arms, thighs, trunk, hands, feet, back. The slightest friction scratch or pressure causes noticeable inflammation.  Just going into summer here so it will get worse. Oh dear!

I have hashimotos disease i have hives i have allergies (gluten, wheat, nightshade, potatoes, eggs, milk, cats, dogs, mold etc) ) i was diagnosed with hashimotos at 30 and the allergies about a year ago. These came on all of a sudden. I also now get hives AFTER removing all of my allergens.  I get b 12 shots weekly because i do not make any. I have ( this month) and impacted small intestine. Last motnh i was borderline diabetic, but i don't eat sugar and this motnh its normal. I have weird sores on my face that have little cores in them and take months to heal.  Every few months i get a new or weird symptom and then it goes away. I am fallin apart. Im 37 i weigh 108lbs lol and if you guys know what this is or have similar things (like i see here) im willing to go to any doctor anywhere in the US if they are helping! Please let me know! B

I have hashimotos disease i have hives i have allergies (gluten, wheat, nightshade, potatoes, eggs, milk, cats, dogs, mold etc) ) i was diagnosed with hashimotos at 30 and the allergies about a year ago. These came on all of a sudden. I also now get hives AFTER removing all of my allergens.  I get b 12 shots weekly because i do not make any. I have ( this month) and impacted small intestine. Last month i was borderline diabetic, but i don't eat sugar and this month its normal.i have severe low blood pressure.  I have weird sores on my face that have little cores in them and take months to heal.  Every few months i get a new or weird symptom and then it goes away. I am fallin apart. Im 37 i weigh 108lbs lol and if you guys know what this is or have similar things (like i see here) im willing to go to any doctor anywhere in the US if they are helping! Please let me know! B

Are you still hive free?

I was suffering from chronic urticaria since last 6months and I was on steroids that is harmful in long run.I was taking every possible remedy from every possible specialists but all in vein then I decided to meet my homeopathic doc friend long been practising hpathy since last 30yrs in pune .he had taken my history and advised some remedies.... surprisingly today I am out of all disturbances.....it was really dramatic and wonderful..... despite of all evidences against homeopathy I will suggest you to visit this man you will be cured definately..... DR. Shiwaji Deshmukh
02025441890
02025453078

I have suffered 7 episodes of urticaria over the past 24 years, usually around 9 months each time.

This current episode has been sever, and I found by moving my Thyroxine dosage (Goldshield for Hashimoto's) to different times during the day, I was able to determine that it was one of the major antagonists.  I have since changed to Synthyroid and my symptoms started to reduce.

I also added  low histamine to my gulten free, vegetarian diet  in October and now starting to see big improvements.   I'm now cutting back on taking some of my anti histamines doses.

Each time I get Urticaria I can relate it to living or working in a new building, and as I have Chemical Sensitivity and are very sensitive to Formaldahyde, I can't rule this out as a catalyst.  I also suffer hemiplegic migraines, asthma and have had endometriosis.

  I started with a severe itching problem back in June of this year and finally decided to go to a dermatologist.  For three months I tried every prescription cream known to man, none of them ever helped.  Long story short, after seeing the dermatologist, then a neurologist, then a chiropractor, I went to an allergist.  Only because I broke out into hives and the chiropractor advised that I have tests run.   I should have done this in the first place, but never dreamed it had to with allergies.   My allergist put me on Prednisone (sp??) for 6 days, 3 tab for the first 3 days and 2 tab for the last three days.  The Prednisone cleared everything up!!  I don't have the hives anymore, but have started to itch again.  I will begin taking allergy shots soon, and hopefully all itching will be gone.  BTW, my allergy test showed that I'm allergic to every tree, all grass and shell fish.  I'm 45 yrs old and hope that I don't have allergies for the rest of my life.

Hello, I just was recently diagnosed with Chronic Hives x 1 month ago. I have read many CU stories, but I truly relate to your struggle. I am also a RN-ER (Philadelphia, PA). I was diagnosed with Chronic Hives after having an anaphylactic reaction to walnuts at work (work in the ER). Within one minute, I instantly began to cough, gag, vomit, and flushed. No swelling of lips/face. No angioedema, because my colleagues treated me very quickly before I spiraled down. Admitted to CCU, I was given a total of 9 epi shots, because I still appear red flushed, cough, dysphagia, and shortness of breath. Readmitted to CCU 2 days later, because my airway did not improve. I was in the CCU for 4 days on a epi drip, because no matter what I ate or drink...I was still appearing with facial flushing and shortness of breath. Currently, right now, my allergist is referring me to another allergist, because I have been in and out the hospital for anaphylactic reactions to unknown food/objects at work. I just recently was discharged from the hospital for shortness of breath and high heart rate. Now, I am on prednisone taper with multiple antihistamines...still short of breath and intermittent hives throughout the day, barely can do ADL's.

Hi there I'm am a urticria sufferer for over twenty years, mines brought on by an allergic reaction to the common cold. As soon as I get a sniffle it then hits me like full on flu. Day 1 start to feel sore and joints feel like they have sand in them day 2 it wipes me off my feet, headache, muscle pain, then day 3 comes the rash and the pain, the rash starts around my hair line then appears on my neck then spreads across my whole body for 24 hours at this point I'm bed ridden and in agony, day 4 after 48 hours I start to feel better once the rash has fully gone. I have been to the doctors and the hospital in the past and there reaction has been well  you must be allergic to something or well it comes it goes just get on with it. I get 2 to 3 attacks a year and only one have I caught a cold and never had an attack. If Incan see a pattern why can't they. It driven me nuts for years and each year it gets worse, I felt as though it was only me until I read this page :-)

Hi, I sound like so many of you on here. When I was 23 I contracted Strep Throat, I was placed on Pennicillin (penicillin). I immediately broke out in hives, the Dr. said I was allergic to the meds. So they stopped them, but my hives never went away. I am now almost 50!!! At one point I was covered with huge hives, 100;s of bruises on my legs, scratches from excessive itching. Swollen joints, eyes, lips, nose, feet and hands. I used to be numb in my face and stomach and hands. I would drop everything I held. I felt like I was burning from inside, and my skin was stretching. I went from a healthy young college grad teacher to almost a monster who felt like she was dying.  We went to every Specialist, I was finally diagnosed with Chronic Idiopathic Urticaria and Angio Edema. I had test after test, Speckled ANA, positive IGE and IGA enzymes, thyroid tests negative, never definitively anything. They said at one point perhaps Lupus. My "vet" of all people said to try an antihistamine and Tagamet to block the histaminic response. So I followed his protocol and simply asked my Drs. to prescribe as necessary. Finally the burning, itching and hives went away. My face and lips and eyes did not swell, I did not have to control my itching while working. Or be on Prednisone! I gained 80 pounds being on prednisone and each time thereafter. Long story short, I cut the Tagamet out for about ten or so years. I went onto Zyrtec and Singulair as I do also have asthma.(after years of Atarax and other sedating antihistamines, years were foggy and blurry, I think I was so tired!) Recently I have developed a rash on my ankles and watery eyes and then swelling from the tears, and the tears actually burn my cheeks!. Today I was researching and found the tear response was a hive response. So contemplating going back onto the Tagamet.I stumbled onto this site.  Pehaps I was in some sort of remission, but I have to say if I try to stop the two antihistamines, the hives come back! If I scratch my arm, it leaves a raised red welt, my Dr. long ago told me that tha was a heightened response and I could use it as a test. When I do not get that red streak I am not inflamed, his words not mine!


I do find it worse with stress and yes there has been a lot of it lately. I am allergic to eggs, soybean, peanuts, dusts and molds. But I have had these allergies most of my life. I feel the strep triggered this. I wish I could find the off switch and all of it would go away. It has not, I do get swollen joints, and have excessive lethargy at times. Right now I am adding Benadryl at night as recently my eyes have been itching. I think it is a flare up, just no visible hives. I am glad to have found this group, to see I am not alone. I have never been pregnant so do not know if it would have helped. In fact I am an infertility patient and I look back with some meds and cycles it may have flared up. I have grown to live with this. I have a nephew, age 11, who recently had strep and developed immune responses except his is his lymph nodes swelling and his intestine swelling and I jokingly said give him an antihistamine and tagamet and see if it works? and they did and added an asthma meds and he is suddenly much better. Wondering if there is a virus or strep connection to all of this? Prior to that I had occasional hayfever and asthma but had outgrown that. I had an unremarkable medical past prior to age 23. I am going to try the gluten diet as suggested on here, to go back on low carb diet and see if I can have my thyroid checked again to see if there is a connection. In the least I hope my story has helped someone to know they are not alone. And I have been on meds from age 23 to now, almost 50 next month, and I have no ill effects from it. I have no heart, kidney, liver, diabetic or other health issues thankfully. Just this crazy itching and swelling issue. At times I think I am allergic to myself!!! Thank you for listening.

Hey there....My Doctor just put me (30 days ago) on Singulair combined with Zyrtec. This seems to be a good combination. However, I will tell you, they aren't completely gone, but my flare ups are now not daily or as widespread. I ran out of my Singulair 2 days ago (going to get it tomorrow) still taking the zyrtec by itself and have noticed a significant difference... I have had a bad flare up....I am going to continue with this regimen for now...the next step they want me to take is Chemotherapy....so uh...no...going to stick with this for now. Just as a note, I did not see a difference right away when I added the Singulair to the Zyrtec....it took about 2 weeks.... Hang in there...  

Hi guys!
I just start feeling better after 7 month’s hell causing urticaria (pressure, food, sun…), angioedema, stomach ache and other symptoms. I was hospitalised 7 times because of internal edema…. I was able to be back to a normal life thank to people like you who share their experience on the forums. In my case all this was caused by a bacteria: Helicobacter or H pylori.  We can get it during our childhood or even it can be contracted when we travel… Some countries have a very high percentage of it. I don’t say that it is your case as well but it is worth to check.  I had to take antibiotics for more than one month but once my breathing test was negative (no helicobacter anymore) I starting slowly getting better. Now, 2 month later I am the happiest person ever. Please check with your doctor if you are H pylori positive. Take care and let me know if you have other questions.

you mentioned in your blog about too much histimine in your body and then working against you? Well I hadnt quite understood that. One of the allergist that I has done periodic allergy tests on me and found on of the things that shows up is too much histimine, it was a number 9 on the allergy tests. the allergy medicine would work short term and then wouldnt work anymore. Still not much relief from the itchy welts.

I tried plaqunil and the side effects for me were horrible. I got welts on my face so bad and painful. The only thing that has helped me so far is Zante 2 times a day, Zyrtec 2 times a day and Allegra  once a day. The dr said she could add another Allegra and Cingular if necessary but so far after a year this is working and I have Ben hive free for 5 days.

That was a horrible drug for me to. I gained 15 lbs in a month and got my period every day. I just came off it Sunday and hoping the side effects wear off soon. My new allergist does not like it either and put my on a antihistamine regiment that is working so far.

My wife had her first Xolair injection on Thursday. No dangerous side effects so far. Her immunologist told her the hives might get worse for a few days and then go into remission for up to a month. I'll let you know how she progresses. This first injection was done under a clinical trial. The next one we will pay for at about $750 a pop. Worth every penny if she goes into remission.

I am now on Methotrexate 10mg per week, and the following daily:  Telfast (same as Allegra) 180 mg, Zantac (Ranitidine) 300mg, Doxepin 75mg, Singulair 10mg, Plaquenil 200mg and Prednisone 7mg. Still getting bad urticaria about 3 or 4 days per week.  It is worst in hot humid weather.  I am usually best the day after I take the Methotrexate but then it comes back again. Hardly a day goes by without some degree of urticaria.
Any ideas anyone?

I read about a woman in Europe that suffered from several swelling to the face and body. She was on different types of steriods and eventually, a physician specializing in autoimmune studies, claimed there was some rare genetic disorder that was causing this. However, there is a special blood test that is required in order to identify this. My best to everyone on here...I started off with these symptoms about 5 years ago. A couple of doctors feel that it's due to Dengue fever (military service related) long term exposure to DDT (still used by some 3rd World countries to spray during the rainy season. Any input is greatly appreciated.

It is now almost 3 weeks since my wife's first Xolair injection. Her hive incidents have dramatically lessened. If she gets a hive it disappears in a few hours. Our immunologist has never used Xolair in the case of delayed-pressure hives and thought it was unlikely that the drug would work. So far, so good. Usually treatments with Xolair last about 3-4 weeks before hive symptoms reappear. Only symptom of concern is unusual tiredness. Could Xolair be contributing to this? My wife is seeing her family doctor to get that checked out.

Hi Debbie,
i'm about the same age than you. My Autoimmune urticaria started when i was about 30 years old.

I have symptoms about twice a year and it lasts 8-10 weeks each time. Itching is like hell, it really hearts. It makes my nights restless. Antihistamines dosn't work anymore.
And PREDNISOLON i wont eat NO MORE. It's horrible medicin.

I noticed this at youtube: https://www.youtube.com/watch?v=Pzz5edhtsUU

I haven't order the book yet, but i'm sure that we might do a lot with eating refreching food.
I try to eat lot fruits. And keeping my weight normal (or rather skinny, because then i'm feeling stronger)

I got my Autoimmune diagnos 14 years ago, before we all thought this is allergi for somthing. But it is just my own body who i'm allergic, like you said too :v :) :v

Lot of happy days and lot of smiles to you Debbie, and every other with this burning Urticaria - - let us support eachothers! :)

Hi,

i was just posting comment here, but there was wrong link.

I meant this link, which i found You Tube last week:

https://www.youtube.com/watch?v=6D5DCN6yU5s

Has anybody already ordered that book? I would like to read commnets about it. I think that with this horrible chronis autoimmune urticaria antihistamins or other meds doesnät really work. ANd i have tried to eat  really fresh and clean food, as natural as i can find here in Northern Europe.

Well - tell here if you have got help by clening your nutrition ??

Stay in touch :)

Hi, thanks to all here for sharing your stories.  I find that this type of research has helped me more than all the professional sites put together!  My son is 13 and has had Chronic Immune Urticaria for three years.  He has had about 8 episodes, the first one extended for the longest until we found a food link.

I know the food link is reported as "rare" but if anyone hasn't tried it, it is worth a go...he went off of everything except pork, rice and water for two weeks.  In the first 24 hours, he went from having 90% of his body covered, along with congestion to almost clear both from hives and congestion.  He now stays away from beef, dairy, citric acid and corn products from our months of experimentation to identify triggers.

When he is clear, he can eat these foods in controlled amounts.  Not sure if this will help anyone, but it is worth mentioning.

My wish for success in controlling this to each!  Kristen

Hi Shellan,

i just like to say Hi :) And let you know your story is a lot like mine. I have Chronic AUTOIMMUNE Urticaria.

I'va tried to H1 + H2 -respetor Antihistamin: means for example SINGULAIR & XYZAL. I don't really know if it's helping or just the time period this Urticaria have now been going on. I've also been teking ATRAX for nights to heliping sleeping while skin is itching anyway.

This time i have had urticaria every day started on January 20th. So about two months now.

Last week i did not take ATARAX at all. ANd yesterday evening i took, AND I REALLY WONDER THIS WHAT HAPPENED ---->  I think ATRAX made my skin become itchy !!!!  

Can it be so, that my body has devolped over sensitiveness for ATARAX????

Have you other having this kind of experience?

Thanks for all & take care :)

We are now at 6 weeks after my wife got her Xolair injection. She has virtually no hives. The ones that do occur disappear quickly. But she is more tired than usual and was at her GP today to get his take on things. He ordered blood, urine and stool testing to rule out known Xolair side affects.

I actually can hug her again without a hive happening an hour later. One shot after almost 5 years of agony and she is like a new person.

Greetings,
I am the mother of a hashimoto thyroiditis, migraine, asthma, allergy, hive suffering 11 yr old.
For those of you with chronic (unexplained) urticaria, look into bed bugs...we asked the pediatrician if that what her hive were, "no no no, thats not what bed bug bits look like" they all said....9 months, countless doses of predisone, atarax, zyrtec, and 14 drs later, it was.  
it may not be what bed bug bites look like on average, but she was having allergic reactions to them, flaring up the urticaria. that problem was solved but she still had the other issues.  we started Xolair a couple months ago ( third shot today) she gets them in her arm and the hurt like heck.. she cries on and off the rest of the day, sometimes affecting her sleep and school attendance the following day.  besides, "breath" and ice packs, do any of you have any recommendations for easing the pain and anxiety related to this treatment?
Thanks,
FuddsMom

Thanks for giving us hope!

please make an appointment with  an allergist. I have been in your shoes with the frustration and the doctor blaming you for not falling into his protocols with predictable outcomes with each drug given. I had most plus some of the symptoms that you mentioned. and it took three different allergist to get me on the path to somewhat normal life! start a calendar with enough space to write what you did that day, everything you eat and how you felt, and what was or was not hurting and scale it on o1-5 scale  5 being the worst. and then take that calendar with you to each doctor visit. doctors like hard data and sometimes they needed it written out good luck you are not alone!
tammy

Hello fellow Urticaria sufferers. I wanted to share with you my story in the hope that it may help someone. I suffered Chronic Autoimmune Urticaria for 4 years. I saw at least 25 doctors and specialists in allergy, immunology and dermatology clinics and the best they could do for me was to prescribe 60mg of prednisolone daily and a cocktail of 5 different antihistamines. As you would probably know from experience, I ended up a walking zombie....a fat one at that from the steroids! I was told by the head of immunology at the Royal Adelaide Hospital that I didn't suffer from any allergies, I had an unknown internal trigger and I would never find the reason, give up worrying and just treat the symptoms. I was miserable, in constant pain and becoming depressed. I was hospitalised on many occasions with severe angiodema to my face, lips and tongue. It was debilitating.
On one of my routine blood tests, the nurse suggested a local doctor who she knew had helped people find reasons for various ongoing auto immune health complaints. She said he kept searching until a cause was found. So I booked in (5 month waiting period). Off I went in the knowledge that this was the final try to help myself. He took one look at my past 5 years of blood test history and pinpointed the reasons behind my Urticaria. I will list them in a moment in case it gives anyone a new idea or something else to explore. Needless to say, I have now been hive free for 6 months and am in perfect health! These were the reasons for my hives, they may not be the reasons for yours but I hope it helps to explore the possibilities.

Insulin resistance: my body was not processing carbohydrates at all. My blood sugar was up and the more carbs went in, the worse it got until....hives.
Remedy: Glucose tolerance test to confirm and a high protein, low GI diet.

Thyroid: my thyroid function was Normal, which means it was producing good levels of T4 hormone ( an inactive hormone) my liver however was not converting it to T3, the active thyroid hormone. So essentially, it was as if my thyroid wasn't working at all. Ask your doctor for a T3 test, they will not routinely test!
Remedy: A prescription of T3 thyroid hormone taken daily. This speeds up your metabolism and regulates your blood sugar.

Vitamin D: very low levels, this can lead to hives. I now take 100,000 mg per week. To be tested again in 3 months.

Vitamin B12: very low, I take a 5000 mg supplement every day.

Cortisol Level (stress hormone): very high which affects your blood sugar balance, I take an Indian herb supplement called ashwagandha every night.

So within a week of all of this my hives disappeared. I have not taken any other medication at all for the last 6 months. I went back to my miracle doctor yesterday and all my levels including insulin and blood sugar are back to normal. I guess my point is, your body does not react with huge painful welts for no reason, keep searching, scream and yell until you find someone to help you find a cause, there is one!
Good luck, I wish you all the best.

For everyone suffering from autoimmune issues I recommend testing for immune system sensitivites to certain foods, chemicals, food additives, molds, antibiotics etc.

Check out ALCAT testing: http://healthmarket.previmedica.com/

I'm considering doing it myself. I hope you all feel better.

Dani1205 you just descibed my life. I'm scheduled to got to the Mayo Clinic on 6/10, this will be cosly Dr trip for me but I cant put a price tag on this. I have seen aaprox 12 Doctors and had tons of meds like your given. 6 years of this pain and chronic itching. I know there has to be a reason I just need the right Dr to find it