| Lost password
185 users onlineYou are not loggend in.  Login
Desperate for Xiaflex
 1 2
 1 2
07/12/2009 01:46
user714

not registered

07/12/2009 01:46
user714

not registered

Re: Desperate for Xiaflex

some very interesting posts I found on a blog about collagenase, the very first one is from a hand surgeon:

"Steve said...

First a disclaimer. I am an orthopedic hand surgeon trained to do traditional Dupuytren's surgery. I learned of the needle aponeurotomy (NA) technique several years ago, and have been doing it for over a year. I also recently attended the annual meeting of the ASSH (Hand surgeon society) in Chicago where a panel of experts discussed the future of Dupuytren treatment in the U.S. The lead investigator for the collagenase (injectable enzyme) presented preliminary data and was followed by a report on results for NA. The ultimate results were similar, but there were several significant differences. With NA, there were no (0) major complications and treatment was completed in one session using supplies available in any hand surgeon's office. Collagenase treatment required multiple visits (as you note) and several (3-4 of app 150 pts) suffered major complications including ruptured tendons and RSD ( a nerve injury). My conclusion from this presentation was that collagenase, at least in its present form, offers no advantages to NA. It will be expensive and much less convenient for the patient. The barriers to NA in the U.S. are interesting to speculate- nothing for a company to market and sell, less reimbursement for the doctor (compared with traditional surgery or collagenase), etc. I would urge anyone with Dupuytrens to do their homework. As a hand surgery professional, I cannot recommend collagenase.
Stephen Helgemo, MD
February 21, 2009 9:21 PM

"Anonymous said..

I work for one of the doctors who has been doing NA for about 5 years, he has been to all the 'sales' meetings the drug company has put on as well, he is well-informed about this and agrees with you, Steve, He will not be offering this drug as NA is so effective and less painful and less costly etc etc etc. He also will not be doing NA on patients who have had this drug injected previously, due to the unknown long term effects it may be having on tendons.

My doctor was quite insulted as well when Axillum, in a follow-up interview, inferred to him they would try to make him use the drug before NA could be attempted, "what would he think of that?" ha! you can imagines... Ah well, they have spent alot of money in development, and they mean to recoup it, patient welfare be damned."

07/12/2009 01:47
User714

not registered

07/12/2009 01:47
User714

not registered

Re: Desperate for Xiaflex

and the last response:

David said...

I am a 43yo guy living in NYC who discovered a nodule under my left pinkie about 15 years ago. Anyway..long story short, after the contracture got way past 90º, I did some much neglected, extensive research and decided to jet off to Paris to meet with Dr.Lermusiaux and get a needle apronevrotomy.
(NA was not practiced in the States at the time because it was not approved by the AMA. Not even sure if is now.)

Not to dismiss collagenase treatment...but I could not have been happier with my experience with NA. Less than one hour later I was sitting outside of a Paris bistro holding silverware in both of my hands, eating a wonderful lunch. My left pinkie was now at about 3º. Not entirely straight, but a remarkable difference. Truly.

And when I read Dr. Steve's and Anon's post I just nodded with approval.

Surgery begets surgery-
Drugs beget drugs-
And the drug companies are not in the business of curing anyone. They are in the business of making money.

If you have DC, think Needle Ap.
They do it in the states now.

08/07/2009 01:18
fingers 
08/07/2009 01:18
fingers 
Re: Desperate for Xiaflex

Xiaflex is currently scheduled for review at the US FDA on Sept. 16, 2009.

If I understand how NA works correctly, it would seem that a difference between NA and Xiaflex would be that while NA breaks up the fiber, it doesn't actually remove it. I think that Xiaflex, on the other hand, does "melt" it. How that difference affects things would be interesting to know, especially for recurrence.

08/07/2009 20:17
flojo 
08/07/2009 20:17
flojo 
Re: Desperate for Xiaflex

You wrote;
"I think that Xiaflex, on the other hand, does "melt" it. How that difference affects things would be interesting to know, especially for recurrence."

Hm-mmmm. If Xiaflex prevents or delays recurrence, that would be a plus. We all look forward to seeing that Xiaflex will do.

08/12/2009 05:03
wach 

Administrator

08/12/2009 05:03
wach 

Administrator

Re: Desperate for Xiaflex

We provide the two original publications on collagenase (brand name = Xiaflex) on our web site http://www.dupuytren-online.info/dupuytren_collagenase.html. Xiaflex weakens the cord to a point where it can be mechanically ruptured (same as with NA). Xiaflex does not remove the cord, nor does NA. Nevertheless the fact that Xiaflex locally dissolves a part of the cord may result in a longer recurrence period (compared to NA) but that still needs to analyzed in more detail. So far there are not yet sufficient data available to judge a long term outcome of Xiaflex treatment.

Wolfgang

Quote:



Xiaflex is currently scheduled for review at the US FDA on Sept. 16, 2009.

If I understand how NA works correctly, it would seem that a difference between NA and Xiaflex would be that while NA breaks up the fiber, it doesn't actually remove it. I think that Xiaflex, on the other hand, does "melt" it. How that difference affects things would be interesting to know, especially for recurrence.




Edited 08/12/09 08:04

05/12/2010 18:09
oewiqr

not registered

05/12/2010 18:09
oewiqr

not registered

Re: Desperate for Xiaflex

try needle aponeurotomy

04/07/2011 12:05
Amarante 
04/07/2011 12:05
Amarante 
Re: Desperate for Xiaflex

Hi for your info Dr L in France is now retired although his porcedure is still in use in france. He did the procedure on my right hand, when the disease was inb very early stages - it did not help at all.

I think the best way forward is Xiaflex, as form April 1st it is available in UK but only with a limited number of Doctors, one of whom i have been talking to:
Dr Bainbridge from Derby http://www.hand-surgery.co.uk/styled/

I suggest you contact him

 1 2
 1 2
available   possibilities   aponeurotomy   dupuytren-online   treatment   surgery   complications   mechanically   practitioners   recurrence   consultant   reimbursement   well-informed   availability   collagenase   Desperate   availablility   difference   interesting   Xiaflex