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Soriatane Not Working,
Considering a Remicade Study
Ed: Thanks for your wonderful site and all the time and concern that you put into it and into suffers like myself. Let me tell you my story.
In 2003/2004 I battled an acute sinusitis and eventually had surgery to correct the condition. Within four weeks I had nine or ten small round (nickel size) patches on my back, abdomen, and thigh. All except one disappeared within a month.
When the solitary patch started to increase after six months, my doc sent me to a specialist who diagnosed the problem as psoriasis in February 2005.
Nothing changed until August when the illness took off and now covers at least 50% of my body. The dermatologist put me on 25mg of Soriatane every other day. I went back to see him today. We both agree that the Soriatane is of little help. He offered me the opportunity to participate in a free, five year clinical study for the follow up drug to Remicade. Any advice?
Thanks, -Tom W.
Ed’s Response: Sounds like you "acquired P" about the same way I did, Tom: A little — for awhile — and then a sudden blossoming into "a lot."
It's hard to give advice about participating in drug studies. Of course, we need people to participate, but it's always a complex, personal choice.
I was almost slated to start Remicade next month, but in the final analysis we decided to try Humira, next, because it is self administered while Remicade requires in-office IV infusions. My rheumatologist (not dermatologist) says both have done wonders for many of her patients with both psoriatic arthritis and skin psoriasis. I wonder if the study you are considering is geared to approval of Remicade (or a similar formulation) for skin psoriasis?
First thing I would want to know about the study your Dr. has proposed is why is it 5 years? (Off the cuff, this sounds like a phase 4 trial for existing Remicade users, post-approval by FDA, to study long term efficacy and side-effects.) As a new user, I would want it understood that if I did not experience improvement in 6 months, I’d probably leave the trial. (Why continue? Chances are the study administrators would probably invite you to leave after 6-12 months if Remicade was not helping you.)
If I were in your shoes, I would try honestly to answer this question: "How badly will I feel if I start this study — committing to at least 6 months — and either don't improve at all, or get worse?" If you can imagine the worst, and you can honestly say, "I could bear it," then the potential benefits to both you (and all of us) may be worth it.Let us know what you decide, Tom. -Ed