Ed: Finished my month-long study of HU291 and although I benefitted by about a twenty percent reduction in my P coverage, toward the end of the month the HU291 reached a plateau and started to bottom out. Just what I was afraid of. Though I seem to be stable at the improved level of lesion activity, the dreaded itch has returned. I hope this is not a prelude to a new flare-up. [See Report from Hu291 Test Subject in Archives.]

On the drug my stomach cleared the fastest and it remains the area with the greatest improvement. During the study the doctors at Rockefeller University Hospital did a total of seven skin biopsies. They gave me the opportunity to view comparison slides of my skin from day one through day thirty. The changes to this layman's eye were unbelievable. I actually returned on day thirty-seven (an extra week) to continue monitoring the effects of HU291. I only wish that there were more than two infusions.

But there is hope for the future. The doctors at the hospital are waiting for approval to start a multi-dose test of HU291. I told them I would be the first one in line to try it. I must now wait until approval is granted by NIH. But this study was not in vain. I received some relief, a better understanding of this disease, and new insight into what's on the horizon in research and development. The biggest and most important plus was the hope I took from this study and that there is indeed light at the end of the tunnel.

Another good thing about being treated by doctors who are involved in the cutting edge of research is that they are current on all methods of treating psoriasis and striving to better what’s now available, or cure P altogether. Because there is a wait time (possibly a long wait) for NIH approval for the multi-dose study, they did not want to leave me out to dry (or itch, as the case may be). So I have now volunteered to be part of a new study with an approved agent, namely "Neoral" (cyclosporine) and gene mapping.

I have just started cyclosporine and they will be doing genetic mapping as the cyclosporine takes effect. This consists of a number of biopsies and constant monitoring of blood and urine. I am hoping not to suffer any side effects but have been well versed in what to expect. Will keep you informed. -Rosy

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Ed’s Response: Dang, Rosy! This is like having a private line to an astronaut on the first Manned Mission to Mars! (Actually it’s better. Chances are remote they’ll find a remedy for P on the Red Planet.... But it would be nice if they’ll look while they’re there.)

It’s terrific the docs at Rockefeller want to keep you involved in their research. Terrific for all of us!

So now it’s cyclosporine and gene mapping. That really raises questions. Surely they’re not thinking cyclosporine alters the patient’s genetic structure?!?! Tell your docs inquiring minds are itching to find out. -Ed

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