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Santyl
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11/16/2009 13:38
Sylvia 
11/16/2009 13:38
Sylvia 
Re: Santyl

I just found out I have early onset of Non-Dupuytrens Contracture and cannot find a physician to treat it. I can go the Princeton, Somerville, Morristown NJ area.
Please specify if they use the NA, Collengenase or treatments or what they do use.
My noticable onset of this came about 1 month after a ligament surgical repair. My physcican never said what it was, eventhough I kept asking what was going on with the skin changes.

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Sylvia

11/16/2009 21:00
jimh 
11/16/2009 21:00
jimh 
Re: Santyl

Did the physician actually say "Non-Dupuytren's"? If so he apparently meant you had a contracture from some other cause.

Edited 11/16/09 23:01

11/17/2009 19:40
Sylvia 
11/17/2009 19:40
Sylvia 
Re: Santyl

Yes, He said Non-Dupuytrens based on the fact, I had no signs of this before I tore the UCL requiring surgery. The whole surgical proceedure had many issues go wrong leaving me casted 8 weeks in bad casts or splints which kept getting changed.

Cannot find literature explaining well enough the difference between Non-Dupuytrens and Dupuytrens Contracture. I was told it's Non-Dupuytrens. I don't fit the profile for Dupuytrens. The fingers affected in this very eary stage are apparently the index and maybe the middle finger. They are not sure there is a cord or a tendon between the thumb and index finger.
The two surgeons I saw were both highly reputable and top of their med school class, but don't approve of this NA proceedure or the Collengenase proceedure, so my options have stopped. It also looks like nothing is done until you are in the last stage.

Saw the list of Physicans. Anyone know how many operations Dr. Gary Pess in NJ has done?
Anyone out there have the NA proceedure done and have it last more than 3 years without recurrance?


Sylvia

07/06/2010 02:29
larryp7639 
07/06/2010 02:29
larryp7639 
Re: Santyl

wach:
I am starting this topic because Joe and John656 had mentioned that they will try Santyl. I think it might make sense to collect experience with Santyl and assess its effect, at least more anecdotes.

For those who are not familiar with Santyl: Abbott Laboratories started marketing Santyl in 2003 (there might have been someone else previously). Santyl is basically collagenase in a topical cream. Abott is using collagenase produced by BioSpecifics (and now probably by Auxilium). The cream also contains ingredients that are meant to help collagenase to get across the skin into the Dupuytren tissue. "This prescription ointment is indicated for debridement of chronic dermal ulcers and second and third degree burns." (http://www.biospace.com/news_story.aspx?...tityId=14254020).

While collagenase injections are aiming to break a cord, Santyl is speculated to be possibly able to reduce a nodule or cord or reduce its growth rate.

So far I haven't found any positive reports on Santyl and Dupuytren's contracture. It might well be that the announcement of Santyl was primarily a marketing effort. But maybe not enough people have tried it. There are also some posts on Santyl in this forum, click on Search, type in Santyl, and select "search in topics and answers".

By the way: We are not encouraging anyone to use Santyl. There is no indication that it works for Dupuytren's contracture and it is not approved by the FDA for this use. But if someone has experience with it, good or bad, it would be great it he/she would post it here.

Wolfgang
Thanks you for the post.
Hi guys, Im a newbie. Nice to join this forum.


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