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collagenase question
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10/05/2007 19:00
Marilyn

not registered

10/05/2007 19:00
Marilyn

not registered

collagenase question

Hi
I am new to the therapy but not the disease. Have had it for about 6 years and until the contracture it was pooh poohed by my GP as possible arthritis etc.
Now I have been diagnosed and the disease is spreading quickly.

I live in NY and I MAY have a choice of the collagen treatment in one of the NY clinical trials (2 of the trials are totally filled and accepting no addtional volunteers) or the N.A. in Florida. The clinical trials are double blind so i could be getting a
dose of Place BO (Dilbert's little joke not mine) and not the drug.

I guess i will go with anything other than open surgery. Any comments, suggestions?

10/05/2007 19:46
ceegee 
10/05/2007 19:46
ceegee 
Re: collagenase question

Hi Marilyn
I've been dealing with this about the same amount of time as you. When first disgnosed had NEVER heard of it. Then found out it was rampant in my family but they thought it was trigger finger or arthritis. If you like you can read my post "alternative therapy...surgeon at Duke doing NA". I have a friend in a clinical trial of collagenase and it is NOT helping her so far (maybe placebo) I have opted for NA at Duke with very reputable hand surgeon. It's in a few weeks so I'll post on how it goes, but I've got great references!
CeeGee

10/06/2007 07:00
Wolfgang

not registered

10/06/2007 07:00
Wolfgang

not registered

Re: collagenase question

You are mentioning that the disease is spreading quickly. Does that mean that you are getting new nodules or is the contraction increasing? If it is new nodules you might have them radiated since in NYC, if the contracture is increased NA would probably be the right route.

Wolfgang

Quote:



Hi
I am new to the therapy but not the disease. Have had it for about 6 years and until the contracture it was pooh poohed by my GP as possible arthritis etc.
Now I have been diagnosed and the disease is spreading quickly.

I live in NY and I MAY have a choice of the collagen treatment in one of the NY clinical trials (2 of the trials are totally filled and accepting no addtional volunteers) or the N.A. in Florida. The clinical trials are double blind so i could be getting a
dose of Place BO (Dilbert's little joke not mine) and not the drug.

I guess i will go with anything other than open surgery. Any comments, suggestions?


10/06/2007 14:13
Marilyn

not registered

10/06/2007 14:13
Marilyn

not registered

Re: collagenase question

Hi
I just received good news and i will be seeing Dr. Pess in about 6+ weeks. I am very happy to have had this message board to read, learn and understand about the disease.

I hope to add to the encouragement of others by my experiences that are to come and will continue to read and learn from this message board.

Thank you all,

Marilyn

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