What you have experienced sounds dreadful. Having endured the urticaria for over twenty years, I suspect that you have had multiple evaluations by well qualified physicians. The best advice I can provide is that you and your doctors seek consultation with a group of physicians who have engaged in research and reported on their experience with this disease. One such group is at the Johns Hopkins Medical Center in Baltimore. Contact information follows.
Orden, Roy Anthony. Timble, Hersha. Saini, Sarbjit S.
Johns Hopkins Bayview Medical Center, Baltimore, Maryland., Division of Allergy and Clinical Immunology, Johns Hopkins School of Medicine, Baltimore, Maryland., Division of Allergy and Clinical Immunology, Johns Hopkins School of Medicine, Baltimore, Maryland. Electronic address: ***@****.
Investigators at the National Institutes of Health are also actively engaged in research on Urticaria You and your physicians might also want to contact their research facility at:
Dean D. Metcalfe, M.D., M.S.
Mast Cell Biology Section
Building 10, Room 11C207
10 Center Drive
Bethesda, MD 20892
I did contact John Hopkins last week. I have also contacted the researchers of Xolair, which was just approved last week by the FDA for CIU.i then contacted my allergist who thinks it's too much of a hassle, paperwork to get thru my insurance. I gave great insurance, married to a NY State Trooper. Today I just had a melt down and asked myself why she doesn't care. Then, I called a previous allergist and they are talking to a rep from Genetech, makers of Xolair about my case. Thank you so much for getting back to me. I have to say the most frustrating part is people thinking they know what's wrong with me, like it's something I ate, not doctors just random people. So I have hopes that I will receive the Xolair Injections. Right now the hives fade away around 3pm and when I wake up the next day I'm covered. Yesterday I woke up with my lymph nodes swollen in my neck. Called my allergist and she just said "Deal with it". I will not be seeing her again and will travel the 2 hours to see my previous allergist.
I have CIU also, but not nearly as severe at this point, but like you I am not willing to accept the status quo regarding treatment. Just last week, my allergist mentioned Xolair to me after failed attempts with other drugs, and while he did mention the expense of Xolair, he did say he thought insurance would cover it (bcbs). I am in a waiting period while he works to attain the drug and work with my insurance. If you dont' mind, please let me know what happens in your situation.