|February, '00 | Briefing
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|Report from Hu291 Test Subject
I wrote last month that I was waiting to find out if I was excepted in a research study at Rockefeller University Hospital to test the effects of a new family of smart drugs [see link at end]. Well, earlier this month I started the study. The drug is something called "Hu291." Rockefeller University Hospital is testing this drug for Protein Design Labs (for more information see their web page at http://www.pdl.com for an interesting tour of what may be the future of drug development not only for psoriasis but for many other maladies).
Well, I started the trial on Tuesday January 18 as an inpatient. Before the infusion two biopsies were taken from my back, one from an area with plaque and one from a nearby plaque-free area. Two IV lines were put in.
Aside: It is refreshing to find a team of doctors and nurses who are seeking to know what psoriasis is, what causes it, and who are not satisfied with standard treatments and modalities to relieve the discomfort and pain.
After the biopsies they drew blood (always drawing blood). Then they infused the drug. This whole process took less than a minute. After the infusion they removed the first IV line and continued to draw blood fifteen minutes, thirty minutes, one hour, two hours, four hours and eight hours after the infusion.
On the release form that I signed they mentioned possible side effects. The most common of which was low grade fever, nausea, aches and pains. They also mentioned other more serious side effects were possible but unlikely such as trouble breathing and cardiac arrest. They just didn't know. Happy to say I had no side effects whatsoever. I was kept overnight, released the following morning and returned to work.
On Thursday I returned to the hospital for the second infusion. They repeated the process again, installed the IV lines, took another biopsy of my plaque skin, infused the Hu291. They repeated the blood letting before and after. This time I only stayed six hours after the second infusion. This was the extent of my time as an inpatient.
I returned to the clinic the following morning and, low and behold, in seventy-two hours there already appeared to be remarkable improvement. My chest, which had been fiery red and eighty percent covered, had turned pink. The plaque had started to break down into smaller patches and the dreaded itch had eased. No longer did I have to scratch till I bled. A simple rub and light scratch satisfied me. Even the doctors were surprised. They took a fourth biopsy to try to follow the pathology that was taking place.
It is now eleven days later and the improvement continues. Large areas of plaque are breaking down, My itch cycle is now much longer and itching is much milder. My skin is becoming more and more pink and new areas of healthy skin is appearing.
I still have three more follow-up visits to the clinic before the end of my participation in this study. I don't know what the long term effects of this treatment are. Will there be medical complications in the future? Will the relief be only temporary (a thought that scares me)? Already the powers that be are planning follow-up infusions and I hope I will part of the group that continues as test subjects. This is the first time in a long time I see light at the end of the tunnel. I hope it not a false hope.
Ed, keep up the good work, I will keep you informed of future results and studies. Thanks. -Rosy
PS. For all those in the New York City area Rockefeller University Hospital has a psoriasis support group which meets on the last Wednesday of the month at 7:30PM. All are welcome. Contact Rockefeller University Hospital for details at 212-327-8333.
Eds Response: Thanks for this terrific report on your trial experience, Rosy. This is the kind of information we never usually get. Who hears from trial subjects? It is important to the scientific method that you get lost for the sake of objectivity. Well ... I am so glad you are sharing with us! Im a fan of the scientific method and am glad for these trials, but I also want to hear from you. We needed to hear from you.
In July we heard about the XOMA Ltd. hu1124 trials that were also promising. Now your hu291 trial. Does the "hu" stand for "human" and the number represent a particular antibody?
NPF has been very excited about the amount of research underway right now, and I am just extremely pleased to be hearing from a participant! Do keep us apprized, Rosy. (And, even though you appear to be feeling much better about derms, I still intend to keep the needlepoint! [see link below]) -Ed
Rosys last month letter: Derms, Flatulence and Respiratory Assist Devices