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Chronic Idiopathic Urticaria Community
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530191 tn?1214166411

Autoimmune urticaria anyone?

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

530191 tn?1214166411
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 :)
Avatar universal
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 :)

648155 tn?1238200957
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
Avatar universal
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
Avatar universal
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
Avatar universal
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???
Avatar universal
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
Avatar universal
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!!!
Avatar universal
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.
Avatar universal
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!!
Avatar universal
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.
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