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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.
Avatar universal
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.
Avatar universal
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.
Avatar universal
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
Avatar universal
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!
Avatar universal
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.
Avatar universal
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.
Avatar universal
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.
Avatar universal
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.
Avatar universal
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. ;)
Avatar universal
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.
Avatar universal
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
Avatar universal
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!!
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