Autoimmune urticaria anyone?

[jbaum27]

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