Xiaflex Study Experience & Question |
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12/04/2010 18:33
oleary
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12/04/2010 18:33
oleary
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Xiaflex Study Experience & Question
Hello,
I found this board when I was looking for people with Xiaflex experiences in the FDA trial or as an actual treatment. I am in the Phase 3 study for Peyronie's disease (I hope you don't mind that I am posting here, but I think this is the only group that has had some experience with this drug.)
Anyway, after my injection, I actually developed no side effects... not even a bruise from the needle. And so I was just wondering if anyone went through the trials who is on here (or had it in the office, knowing it was the real thing) - did you ever experience a zero side effect result? From the placebo or the xiaflex? Has anyone taken a look at the syringe and seen if the xiaflex looks more like a gel or a liquid?
I think I might be in the placebo group...but maybe I'm just not that sensitive to the drug. So, I just wanted to ask if anyone here had some thoughts...13 months is a long time to deal with all the study requirements to be in the placebo group. It's quite an invasive study physically as I'm sure you could imagine... but really the time commitment & fact that they prohibit use of other treatments / devices (that work a little bit at least) for the full year is what is frustrating to me as well.
Thanks again. I really appreciate any info.
Edited 12/04/10 20:35
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12/04/2010 21:58
GMichaelnot registered
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12/04/2010 21:58
GMichaelnot registered
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Re: Xiaflex Study Experience & Question
Of course, every person reacts differently to different drugs, and I'm in no way anything like an expert, but if you have no side effects at all from the injections, I suspect there's a good chance that you're in the placebo group. I had significant swelling in my finger after my (genuine) Xiaflex injection, along with some other side effects (pain and swelling in the armpit), and I'm the kind of person who seems to rarely suffer side effects from drugs. Having said that, Peyronie's is a different disease in a different part of the body, so who knows? And maybe there are others here who had no side effects with their Xiaflex experience. Hope it works out.
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12/07/2010 04:09
learynot registered
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12/07/2010 04:09
learynot registered
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Re: Xiaflex Study Experience & Question
Thanks Michael... well, I'll stick it out for now and see what happens. Maybe the doses or the solution is a little different - so the reaction might different. Or, I have the placebo. When I told my primary care doc about the DP patients reactions vs. mine he was like "oh you have the placebo then... dont waste your time"...like completely matter-of-fact. The study doctors don't seem to think it's 100% guaranteed placebo just bc I have had no reaction, but then again, what can they really say.
At least if I stick through the whole thing, I can get the real drug and save a big insurance battle and $18,000 worth of injections...god knows what my copay would be.
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12/07/2010 23:30
Diana
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12/07/2010 23:30
Diana
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Re: Xiaflex Study Experience & Question
Auxilium is definitely looking for those dollars! In my small local paper, the Santa Cruz (CA) Sentinel, they have had a page and a half advertisement for the last few weeks.
One silver lining is that it does show a picture of a hand with contracted fingers and says the name Dupuytren's which might give this disease more publicity.
Diana
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