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|Hu-291 Then Cyclosporine
Dear Ed: As I reported the last time, I have started Neoral (cyclosporine) and it has now been about eight weeks. For the first time in God knows how many years I am just about "P" free. The study has now officially concluded with the doctors taking the last of the biopsies.
I cannot believe the difference. To date I have not had any of the side effect that were stated on the warning label. So I asked the question what's next. I didn't want to be in the lurch and I know I can't stay on Neoral forever.
The good doctors at Rockefeller University hospital refused to drop me high and dry. We have decided to continue the cyclosporine for a few more months while a new protocol in developed for the multi-dose HU-291. They are expecting to begin by mid June with a five dose infusion but here lies the problem. To be eligible for the new study I must come off Neoral and be medication free for thirty days. During that time frame the doctors have told me there would be a 90-95% chance of a rebound. I am treasuring this "P" free time and I don't know if the research is worth dealing with a full blown eruption. Maybe after the summer.
One other thing. Although all research is confidential and mine and all other participants names are protected, I decided to go public with the research. Because I am an elected official in my community, I have access to some members of the press. Last week Time Warner Cable News Of New Jersey did a health piece on me and the study. I have received numerous responses to this story and I am trying to decide what to do next. I want to start a support group in north Jersey or possible host a conference on psoriasis. Any idea or thoughts?
Well, I will let you know what I decide in regard to the next study of HU-291. I'm pretty sure I will forgo this temporary remission and follow through with the new round of testing. The thought of a cure, with an agent that is not toxic, is too appealing to me, my wife and my kids. They will support whatever I do. I guess I am lucky. Feel free to post my E-mail address if you wish. -Rosy
Your report pleased me immensely because I started taking Neoral last week! Congratulations on the news coverage. All flakers benefit from this kind of publicity, which encourages and rewards research. If you are a member of the National Psoriasis Foundation you may already have noticed that, in the current issue of Psoriasis Resource (March 2000) there is a list of psoriasis support groups on page 13. I see two in New York City and one on Long Island but none in New Jersey. If you are interested in starting one, NPF recently published a booklet titled How Do I Start a Psoriasis Support Group? It’s free, so zap them an email and get a copy.
I don’t envy the decision you face about maintaining your remission for as long as possible on Neoral or quitting to return to the next Hu-291 trial. You know that if you decide in favor of the trial, your on-going reports will be welcomed here. Thanks! -Ed