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Pirfenidone
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03/14/2004 23:28
George

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03/14/2004 23:28
George

not registered

Pirfenidone

I was diagnosed with Dupuytrens about 10 years ago and had a very successful palmar fasciectomy about 7 years ago. Nonetheless, the nodules and bands continued to develop in other parts of both hands. Two years ago, I started treatment in a clinical study of an investigational drug, pirfenidone - an anti-fibrotic which has been successful in treating pulmonary fibrosis. The purpose of my study was to investigate the drug for treatment of radiation-induced fibrosis. (I was treated with radiation and chemotherapy six years ago for throat cancer). The drug helped a lot with my swallowing but I also noted a distinct improvement in the Dupuytrens. It used to be painful for me to tightly grasp certain objects - no more. I saw my hand surgeon last week and he measured my range of motion in all fingers as at or within 2% of normal. On some fingers, the bands have disappeared and on others, they have significantly reduced. So, something is going on and I think it is the pirfenidone.

There were less than 10 people in my study and there are not that many people with pulmonary fibrosis so I might be the only person taking this drug who happened to also have Dupuytrens.

I have emailed the manufacturer of the drug to make sure that they know about my experience. I am not sure what to do next but I would like to get some organization to press the manufacturer to conduct a study of this drug on DC victims. BTW, the only side effect I experienced was some stomach upset which Prilosec counteracted and some fatigue during the first few months of the study.

03/14/2004 23:46
jim h

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03/14/2004 23:46
jim h

not registered

pirfenidone

Interesting. If you actually saw bands reduce or disappear, we're entering new territory. Here's an update on the development work for this drug:

http://www.fightingpulmonaryfibrosis.com/exh19.htm

03/14/2004 23:32
Randy H.

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03/14/2004 23:32
Randy H.

not registered

Pirfenidone

George,

Interesting info.

We are all aware of the nearly random unpredictability of Dups, so your experience needs to be viewed with some skepticism. However, Dups is not usually in the habit of reversal, which is what you experienced. How much reversal did you have? What were your pre-study degrees of contracture? How many degrees of improvement did you experience. Have you sent your surgeon's medical recorded of this event to the manufacturer? I believe that once the drug is approved, it may be used "off label' for other conditions. Has it passed Phase III?

03/15/2004 23:21
jim h

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03/15/2004 23:21
jim h

not registered

Pirfenidone

This makes a lot of sense. It's an antifibrotic that inhibits proliferation of fibroblasts and collagen synthesis - exactly what's behind Dupuytren's. We have a fibrotic disorder, and this drug seems to target it.

However, anyone who's followed the Biospecifics story knows that Phase III is a long road and few products ever reach the end.

03/16/2004 23:37
Anon

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03/16/2004 23:37
Anon

not registered

Thanks for posting

This is very interesting information.

Anon

12/08/2004 23:48
Frank N.

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12/08/2004 23:48
Frank N.

not registered

Dupuytren~sq~s Disease

Several months ago, some lumps appeared in the palm of my left hand. I had no idea what they were until now. I'm going tomorrow (sceduled months ago) to beg for Pirfenidone for my Pulmonary Fibrosis which I've had since 1984. I developed emphysema several years ago and I'm running very short of "in between" room.

09/13/2005 23:09
Merle

not registered

09/13/2005 23:09
Merle

not registered

Pirfenidone + Dupuytren Contracture

Hi George,
I would like to make contact with you to discuss
pirfenidone and Dupuytren Contracture. My wife is taking pirdenidone for MS on an experimental basis.

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