Autoimmune urticaria anyone?

[jbaum27]

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

[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.