I have had CU since 1994. I spent 15 years on prednisone almost constantly, and unless I was on the prednisone I NEVER went into remission. Every time I would try to taper off the prednisone I would get to under 10mg and then the hives would come back with a vengance. As time went on, it would take higher and higher doses of steroids and antihistamines to get it back under control. In August of this year I made it down to 5mg of Prednisone and had me worst outbreak ever. In one week I was in the ER 4 times with my throat swelling shut, 2 visits were only 8 hours apart. I had hives covering just about every inch of my body. I was on 180mg daily of oral predisone with intermittent injections of 100mg or more of prednisone and kenalog, as well as benadryl 100mg every 6 hours and 50 mg of zyrtec. There were a few times that week that I honestly thought I was not going to make it. I went 4 days with no sleep between the massive doses of Prednisone and the constant itching, I began to wonder if it was possible for my heart to just explode from all the steroids.
After 6 days, I was finally seeing a little relief. The hives were not gone, but my eyes were at least open a small slit and I no longer had any in my mouth or throat. My family doctor had heard of a new allergist in my area that specialized in CU. My doctor called the allergist that afternoon and the allergist called me at home that night to ask some questions and told me to be at her office at 8 the next morning. She immediately did in office biopsies and blood work. She also informed me that I not only had CU, but delayed pressure urticaria, dermagraphism and angioedema all at once. I was breaking out in hives and then I would scratch them and the DPU and dermagraphism would kick in and just make things worse.
She promised to have me "cured" within 6 months. I laughed at her. she started me on doxepin, prilosec, atarax, and ativan, kept me on the steroids but cut the dose to 140 and took me off of everything else. She rescheduled me for 4 days later so she had time to get the test results back. When I came back, I was almost hive free. still on a massive dose of steroids, but at least I was not itching. just as she suspected, my CU index was though the roof and my problem was autoimmune, not an allergy. She started me on Dapsone (I had to test positive for a g6pd enzyme before I could take it) and told me to cut down on the steroids 10mg a day until I made it to 40mg. Everything went great, at one point we had to up the doxepin and dapsone, but I was able to get off the steroids COMPLETELY for the first time in 15 years.
I am now totally non reactive. I can scratch myself and my skin will not even swell or turn red. I have not had a hive at all in almost a month. I go back in mid January for a recheck, and if everything is going well then I will go off of everything but the dapsone. After the end of february I should be able to go aff the dapsone as well. Out of all of her CU patients, she has done the same treatment for the ones that are autoimmine, the dapsone has had a 100% success rate. She has had 3 patients (one of them herself) that had a slight relapse after 2 years, but another 3 months of the dapsone and antihistamines took care of it and there have been no further problems.
It feels funny to not have to base my life around breaking out anymore. I no longer watch what I am eating because I am worried about a reaction, and I actually knelt of the floor and played with my son for a while and my knees never swelled up like they used to.