About My Chronic Urticaria

Man: Itchy hives could have ruined my big day.
Woman: Miserable itchy hives drove me nuts!
Oh, you people have it easy!

The commercials for Claritin’s new “Hives Relief” product make me laugh. It’s not that they’re designed to be humorous, but when you’ve been living with chronic urticaria for five years…well, the complaints of others are hilarious. Some of you may not be aware of this part of who I am, because we’ve only met recently, but I’ve come far enough that I can develop that kind of dry humor about my disease. I can also tell you about it.

Let me tell you what it’s like to have severe chronic urticaria. I missed a lot of work because I itched so much (or for doctor’s appointments related to that). I’d wake up with my face swollen and itching so bad that I’d call in sick. Once, I tried to go in anyway, and my boss took pity on me and sent me home. Sometimes my eyes would be swollen almost entirely shut. I missed family events because I was miserable. Most people don’t equate itching with pain, but when you’re covered in hives, they really do hurt. This next tidbit may seem like too much information, but it’s very illustrative of how severe this was for me. I’d go to the bathroom just to pee quickly, and I would end up staying for at least ten minutes because having my pants down gave me the opportunity to scratch the hives that had been hidden under my clothes all day. I couldn’t sleep without scratching, though I eventually trained myself to hold absolutely still and try not to touch myself. The problem with hives is that they’re self-perpetuating. My girlfriend finally learned not to tell me “don’t scratch,” because it was pointless. When it’s that bad, you must scratch. There is no option. But maybe, if you can will yourself to stop, the urge will lessen for a while. When using the laptop in bed, I would lie almost flat but with my head propped up, with the computer on my chest and my arms bent to type. That posture isolated the rest of my body and allowed me to take that time to let the need die down a bit. When I did scratch, it was so intense my skin would go raw and I drew blood countless times; I couldn’t let my nails grow long or it would be even worse. I think the scariest time was when my tongue itched. You may have thought your tongue has felt fuzzy or not quite right, but let me tell you: you’d know if your tongue had itched. It’s a sensation like no other, and I’m glad it only happened once because it was terrifying. Sometimes I’d hide behind my hair because of the swelling, which is angioedema. Commonly associated with chronic urticaria, it can happen at the eyes, lips, hands, and feet – and for me, it did happen in all of those places. Sometimes my feet would be so swollen it was too painful to walk, and I’d have to have things brought to me because my feet wouldn’t bear my weight.

Of course doctors tried to help. I went to multiple allergists and even a dermatologist, none of whom could help. They’d try me on Zyrtec or Claritin, and those would help for a little while, but then they’d stop working. The doctors would increase the dosage, change the meds around (did you know the antidepressant Doxepin also has antihistamine qualities?), and it wouldn’t help. I went to urgent care more than a dozen times to get Medrol dose packs – short courses of powerful steroids that would knock the hives out for about a week. I was even on major steroids for more than a month, long enough to permanently alter my metabolism. For immediate topical relief, I tried Benadryl sprays, Zonalon cream (by prescription), and a generic anti-itch gel. They only worked in that they kept me from scratching for a while because my skin would be sticky afterward. All this time, in an attempt to discover the cause, my household went through a variety of shampoos (Johnson’s Baby is best), body soaps (Cetaphil), and detergents (Ivory Snow). I tried cutting out various parts of my diet, even going without dairy products for six months. Then finally, in early 2002, I got a referral from a local allergist to an urticaria specialist in South Carolina. I can say without exaggeration that Dr. Allen Kaplan gave me my life back. Not only did he diagnose what had been for three years an idiopathic condition, but he gave me a cocktail of medicines that have helped immensely.

It turns out that my hives do stem from an allergy, but not to pollen or nuts or anything easily avoidable. Unfortunately, I’m allergic to myself. More specifically, I’m allergic to a component of my blood called IgE. I’ve heard that “cleaning” the blood through plasmapheresis, which is used with immune conditions such as mine, could help, but I’m not sure. Meanwhile I am on a mix of medications that Dr. Kaplan has arrived at after more than a year of tweaking. I’m on a very high dose of Atarax (so high that I can’t use it for anti-anxiety purposes, which I’d had it prescribed for years ago), as well as Allegra, Accolate, and Periactin. I’ve had to fight with various insurance companies to get these medications, which are absolutely essential: if I forget to take them for even a day, the hives start to creep back. I also have a bottle of steroid sequence (similar to the Medrol dose packs I used to get) that I can take in case of emergency. This particular mix of medications has worked well for me for a year now, but if the hives do come back I can take that steroid sequence to knock them out while waiting to coordinate a medication update with Dr. Kaplan, the insurance company, and my pharmacy.

For a long time, I had forgotten what it was like not to itch. I literally could not remember a day without terror. Now that I’ve been essentially hive-free for two years, those days are behind me…but I won’t forget them. I hope it never comes back that severely, and that it resolves itself within a few years from now (which Dr. Kaplan says it does for many patients). If you’d like to see pictures from when my hives were severe, I have placed some in a photo gallery for public viewing. (Previously those were only available to members of the International Chronic Urticaria Society, a wonderful support group with more information on the varieties of the disease.) The pictures are from April 2002, just before our trip to see Dr. Kaplan. We were afraid I might not have severe hives on the day of the appointment (although I had to go off all medication prior to skin testing, so having hives was almost guaranteed), so we took some pictures on two consecutive days. Please note that some photos show me in my underwear, but even that has been blurred.

If you have any questions about chronic urticaria, I’d be happy to try to answer them. I’ve been living with it since February 1999 and I will do my best to help. Another good resource is the International Chronic Urticaria Society, and I highly recommend contacting them for support. They have a very active mailing list that anybody may join.

Please note: I am leaving comments open on this entry because others have been adding their experiences. However, this is not – NOT a discussion forum. Your e-mail address does not appear on my site when you post a comment; only I have access to it. Therefore, you should not be posting questions “for everybody” – please only share your experiences. Again, refer to the ICUS mailing list for support.

Added 12/20/07: Please note that Dr. Kaplan is retiring effective 12/31/07.