How many times can one have RT?

I asked my husband's hand surgeon if he did Xiaflex injections. I have a slight progression of the slow type of Dupuytren's. He emphatically replied that he will not use Xiaflex under any circumstances regardless if the FDA has approved it. He went on to say that his hand surgeon's association would consider it malpractice because Xiaflex dissolves (or however it works) not only the affected tissue but also the nerves and whatever else it comes in contact with. Have any of you heard about this?

Xiaflex has been approved by the FDA. Xiaflex is the brand name for collagenase, an enzyme that dissolves primarily collagen, i.e. the material that constitutes the Dupuytren cords. But collagen is also used in the healthy body, e.g. in joints, and collagenase might affect other tisseu as well. That why it is injected in very small quantities into the Dupuytren cord. By the way, cortizone also affects/destroys other tissue and has been injected into Leddehose and Dupuytren nodules for decades.

Wolfgang

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I asked my husband's hand surgeon if he did Xiaflex injections. I have a slight progression of the slow type of Dupuytren's. He emphatically replied that he will not use Xiaflex under any circumstances regardless if the FDA has approved it. He went on to say that his hand surgeon's association would consider it malpractice because Xiaflex dissolves (or however it works) not only the affected tissue but also the nerves and whatever else it comes in contact with. Have any of you heard about this?

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As a participant in the FDA Xiaflex trials with a worsening condition afterwards and a "correction" that lasted less than a year, I'm definitely not a Xiaflex fan but there are some things I found in the trials worth noting. Over the 6-7 years prior to Xiaflex being approved, the dose of collagen in subsequent stages was reduced to 0.58 mg per injection. Xiaflex is injected directly into the cord with explicit instructions on hand movement and other activities after injection. Blood tests were required upon enrollment, prior to injection, after injection and at 3 month intervals for a year.Other reactions, illnesses and subsequent events were monitored fairly closely in questionnaires. Stanford, the test site where I had my injections, is doing a 3 year followup study. I'm going in Monday and will be monitored once a year for the next three years. Again, they want a report of all experiences, illnesses, reactions, etc. since 12/2007 and will also require another blood test primarily, I believe, to monitor blood antibodies. Finally, I don't believe there was a single reported case of it destroying other tissue in the trials. That said, however, it does have that potential and I think it's essential that if someone decides to do it, they make sure they have an extremely qualified hand surgeon and not just any doc. I find it really upsetting that apparently any MD can purchase and use it. I'm sure there will be some abuses and over-use/too many injections. As far as I know there aren't any guidelines as to how many cords can be injected. Personally, I think it has exacerbated and accelerated my disease but there's absoutely no way to prove that but I wouldn't go near it again without years of followup studies. I found some current info online and I'll post it with it's own title.
Diane

You have come to the right place to ask questions...many wonderful people on this forum who are caring and take time to answer questions... I know how great I felt when I was desperate for answers and discovered this forum back in 2006... it helped me cancelled a surgery and go for needle aponeurotomy instead.

Although I was not in the Xiaflex trials...from what I've read on this forum, we need a few years to see the long term results...Click on Search above, and find out more about Xiaflex on previous posts.

You don't mention which fingers you still have a problem with,or the degree of your contractures. Would you consider/are you a candidate for NA (needle aponeurotomy) ? Lots of information on the bar on left side of this page....

Post all your questions...you'll get lots of answers....

Edited 04/12/10 00:30