I'm a 45-year old woman.
I had CU in 1995 for months until a dermatologist prescribed Atarax. That drug was a miracle for me. It took a couple months, including weaning myself off of it, but I was hive-free! My philosophy, by the way, was not to frustrate myself trying to find a "trigger." Whatever did cause it initially was long gone and the hives continued. I was concerned with suppressing them until I could get back on kilter and resume a healthy and rested lifestyle. And Atarax did that for me.
Then fast forward twelve years. I got CU again in July or August 2007. Same story: never a hive-free day. Some good days, some bad days, but always hives.
I started with a primary-care physician. He prescribed Prednisone for a few days. I thought this would knock them out. Nothing. I was later told that for chronic idiopathic urticaria, steroids don't work. The PCP then sent me to an allergist.
The allergist prescribed Atarax, but it didn't work this time! She took skin tests. My skin is dermographic, so I swelled at every pin prick. The bigger spots were horses, grass, cats (a bit), and a few other things. She had me try Benadryl and Xyzal, but my insurance wouldn't cover the latter, so I didn't try it. She realized this was not her expertise and referred me to a well-known dermatologist. That was in July 2008.
I'm still seeing the dermatologist, who is considered an expert in urticaria. One of the first antihistamines we tried was Allegra (180 mg). That is one drug that had positive results (shorter duration of hives, less itch, fewer). So I've been on Allegra ever since. Combined with Allegra, we have tried many antihistamines -- one at a time and often starting at 1/4 dosage and increasing dosage each week until the full amount. They include: Atarax, Zyrtec (30 mg), Clemastine (8 mg), Cyproheptadine (12 mg), Claritin (4/day), Vistaril (75 mg), Zyflo, Promethazine (100 mg), and Doxepin (80 mg). We also tried Colchicine (2 mg) with the Allegra. None of these worked for me, but I am listing them because they do work for some people; just like Atarax worked once for me.
Some of the above drugs gave me strong side effects, including diarrhea (I lost 8 pounds in two weeks and I only weigh 107), constipation, blurred vision, dizziness, and fuzzy-headedness (felt like I couldn't think clearly). I would have considered putting up with some of the side effects if the drug suppressed the hives, but none did.
Then we tried Dapsone at 50 mg and then at 75 mg. The full dosage is 100 mg. Dapsone is described as an immunomodulator -- not as severe a drug as an immunosuppressant. I had blood work done before starting the drug. If there had been any sign of anemia, Dapsone would have been proscribed (as in, out of the question). But I was fine. I had my blood and urine tested after one week on 50 mg. Hemoglobin down one point, but still fine, and the hives were better. Then two weeks later, with steady results (not hive-free, but consistently fewer hives), the test results showed Dapsone made me anemic. I felt fine, but my hemoglobin dropped two points in two weeks. So I immediately stopped the Dapsone, even though it was working!
Now I face the decision of whether to try Cellcept. It is an immune suppressor. I am leery of such a strong drug. I have read of side effects, including lymphoma -- which is in my family history.
I don't think the dosage or duration of Cellcept for uriticaria is much as compared to transplant recipients -- I understand that Cellcept is primarily prescribed to prevent organ rejection -- but what I read about
it on the internet is scary.
Does anyone have experience taking Cellcept for CIU? What exactly are the down sides? Any details would be appreciated.
Expensive Hives said...
I went to the Mayo Clinic in Rochester Mn some 20 years ago and they ran many tests but did not check for the autoimmune problem that turned out to be the clue to my treatment. My allergist says that many advances have been made in the last 5 years in the diagnosing and treatment of urticaria. If your doctor is an older doctor who has not kept up with the latest advances he may not be aware of all the testing and treatment possibilities. My suggestion: get a recently graduated allergist. Have him do some research on the use of Cellcept for this condition.
Certainly I would not have started out taking a serious antirejection drug if anything else had worked and I understand why Doctors do not try it as it does have some serious down sides, however when you reach the limit of your endurance it is time to try some off label approaches to solve the problem. For me the side effects of the Cellcept have been less than the side effects of prednisone.