Autoimmune urticaria anyone?

[jbaum27]

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

[chrisbeverly]

I have had Chronic Autoimmune Urticaria for 21 years now (I'm 42), and mine is hereditary.  I remember as a kid watching my mom suffer and having to grab her "itch pills" for her.  At first when I started developing hives, I would take one of her pills and it helped within 20 minutes.  Sadly, they discontinued it (Polaramine), and every allergist I have seen has sworn that the H2 antihistamines are better, but nothing has ever worked as well as Polaramine.  My mother went into remission for probably 10 years but since Menopause she has started having intermittent hives again, although not daily or severe. I keep hoping that one day I will go into remission, even if it's only for a few months, just a little relief would be great!!!  While I have tried almost everything over the last 20 years, not much seems to make much of a difference (my last allergist wanted to put me on Cyclosporine but after doing some research, I opted against it.  I have a small tumor on my liver, and don't have a gall bladder, so the potential liver issues are concerning).  Like most, I have had my share of bad experiences with Prednisone and that is no longer an option either.  I've read that any dose of Zyrtec over 20mg is not effective, but I have had limited success in taking 40-50mg per day, but I have to keep zyrtec consistently in my system daily in order to keep the hives at a tolerable level (If I dare go more than 24 hours without, I am bed ridden with hives).  I have found (completely by accident) that a raw foods diet really does help, and have recently eliminated gluten, which also helps.  So I'm diving in full steam to a 100% gluten free diet to see what the next few months bring.  Years ago I cut out caffeine, HFCS and have started eliminating all GMO's, dairy and eggs as much as possible.  I try to make my own everything, and have started noticing a difference.  I'm hoping once my body is fully detoxed from everything that I will see a significant difference in my condition.  My heart goes out to everyone that is suffering through this... it is often times not only debilitating but depressing.  I will post back my results.  All the best~Chris

[angelaw]

  Hello, Same problem here. 38 and I have had hives from a few all the way up to several trips to the ER because they get so bad my eyes swell shut every day for 7 years now.
   Triggers for me are stress and excess drinking ( meaning if I have more than 2-3 drinks) Also they are always worse when its period time.
    In addition to the daily  hives for 7 yrs straight I now have other strange symptoms and keep getting more. These are hair loss ( tons when brushing or washing) night sweats, insomnia, center of chest during a bad flare up feels like cramping, my toes are now usually blue and ice cold and my wrists and hands have lost so much strength I have to take breaks if I put my hair in a french braid ( its not long, med length), I'm happy and full of energy about 2 days out of the month. The rest of the time im edgy, irritable, cant focus or remember things and have developed large blood clots during menstrual cycle.
       I'm on a mission to get some answers, on my third Doctor and allergist has confirmed it is autoimmune disease. But which one is what I want to know????????? Any one else have any ideas???
    

[Gaidumdeedice]

Many years ago I suffered chronic hives, hands and feet, every evening mainly.My family doctor in Ahmedabad, India tried many things to control the awful itching,but nothing worked. He decided eventually to try auto blood injections.Withdrawing blood from a vein, then quickly injecting it into my rump. I feel that I had maybe three of these injections, and what do you know,the hives were gone.

[bblew94]

Hi,

I was just diagnosed with CAU (Chronic Autoimmune Urticaria) this last week. I'm already on second-level treatment, and am taking 50mg of Doxepin and 10 mg of Montelukast as well as up to 4 Zyrtecs a day (a LOT of antihistamines). I'm meeting with my doctor on Tuesday since my body is so resistant to antihistamines, and we are going to talk about Xolair as the next step. I'm willing to do anything that will work, but I'm aware that this treatment is very expensive. Along with the hives, I also have angioedema, and I have flare ups every single week. The hives are concentrated around my eyes, and the swelling makes them look huge. Not only does it look terrible, but I feel even worse. My eyes are itchy, watering, burning and my eyelashes fall out. The hives spread down my face and neck, and sometimes, to my arms, legs, and back. It's very embarrassing and I'm getting so tired of the side effects. Prednisone is the only thing that seems to be working, so I end up taking it weekly. This has been going on since July '13, so 4 months now. Very frustrating stuff, as you are all aware of that. I know this is going to be a life long thing, but I just want to get it under control.

I'm a 19 year old woman in college currently taking 21 credits. I have no doubt that stress is a contributing factor to my flare ups, but frankly, there's nothing I can do about that right now. Finals are coming up, and I'm not going to see my academics suffer. Anyway, along with medication, I've tried yoga, mindfulness meditation, teas/herbs, supplements, you name it.

I'm posting to see if there's any advice for me. I'm seeing my doctor/going to the university's clinic 1-2 times a week. I just want to manage this without always reverting to Prednisone! Anything will help! Thanks so much!

[erabin]

I started getting hives in high school year 2000 from smoking pot, so I stopped smoking pot. The funny thing was that I had been smoking pot for over a year before I developed the hives. After that they went away completely until September 1 2013.
I got a hive on my ear, when I was outside all day without a hat. I thought it was the sun, even though I had been outside all summer without a hat and didn't have any problems. The hives persisted.
I was on a new birth control for about 8 weeks, I thought maybe it was that. During my period week, I didn't take the sugar pill and I was on prednisone. The hives cleared up. The prednisone ended and as soon as I took the regular birth control pill, it hit me like a ton of bricks. I immediately stopped taking the birth control, but it was too late and I ended up in the ER. I started taking a regiment of Benadryl and Prednisone, that helped until the prednisone ran out and then hives came back with a vengance.
I stopped taking the benadryl, too to see if that was causing it. Sure enough, one night before bed I took it and woke up the next morning covered in hives. Ok, so no benadryl.
At this point I had switched back to my old birth control which caused migraines instead of hives. I would actually take migraines over hives any day. Well of course, I started to have major neck pain, I took an excedrin, again, covered in hives. Same thing happened when I took a Zyrtec. I have actually stopped taking birth control, anti-histamines, the only drug I'm still taking is advair for my asthma. This is new, like the last 24 hours of not taking ANYTHING. Of course, I'm an idiot and last night I went in my friends infrared sauna. This is also not a good idea when encountering hives.
Today is day 1 of no anti-histamines, no birth control, no pain medication of any kind.
The stress from the hives has actually resulted in me losing my job, so now I don't have insurance and medical bills are already piling up. I'm not even seeing a doctor or specialist because I can't afford it. Plus, all the fancy drugs don't even sound like they make a difference anyway. Would you rather be on a bunch of drugs all the time or have hives? Sounds like a lot of people are on fancy drugs and still have hives. Plus I'm figuring maybe it's better to let the hives run their course, maybe they will end faster. They will stop eventually right?
Anyway, I haven't really seen anyone on here that is breaking out in hives from the medication. I don't know if I'm autoimmune, but I don't think its related to food. I guess I'll never know if I don't get help.
Honestly, I'm afraid to try any new drugs, they might make what I'm already dealing with, worse. Is anyone else breaking out in hives from the anti-histamines, pain-killers? The only thing I seem to be ok with is prednisone, which my old doctor stopped prescribing because of health risks related to long term use.

[itchyaussie123]

Hi Jess
I had the chest pain that you mention and it was quite frightening.  I have been to emergency to check that I wasn't having a heart attack and have had endoscopy and stress test, all showing nothing wrong. My Dr says you can get urticaria in the oesophagus and another possible cause is inflammation of the cartilage around the ribs.  I have had no chest pain for some time and have been taking 300mg ranitidine twice a day - double your dose - as well as doxepin, prednisone, methotrexate, telfast, singulair.  Also I have been on a course of Xolair injections - one a month for 4 months so far.  Recently I have managed to stop the methotrexate and reduce my prednisone dose to 2.5mg per day.  Still get the occasional spot of urticaria especially in hot weather.  I am due to have another Xolair injection next week and may have a 6th injection.  I am not cured but am certainly heaps better and I am hopeful that the additional 1 or 2 injections will do it.  Xolair is costing me $475 per dose.  My pharmacist is selling it to me at cost.  There is also the cost of seeing the immunologist to have the injection, so it is very expensive but I think it is worth it.  I have spent thousands of dollars on medication over the last 4 years, so I see the Xolair as a good investment as well as a very effective treatment for my condition.