Artisthands said:
Re: Think Xiaflex is safe? Read this
In the article at the tiny url there is this statement

"Kaplan also described nerve injury as surprisingly low and added that no one reported temporary numbness."

I was in the III stage clinical study and reported numbness in my finger. It was temporary and it was minor (lasting about six weeks) - but I did have numbness - so Kaplan is incorrect in his statement."

I was also in the stage III clinical trials and they were not well run and I participated at a major university. They cut what was supposed to be a 12 month tiral down to 10 months. The injections-- and the trial protocol was 3 injections directly into the cord-- were extremely painful as was "breaking" the cord. What the risk would be for more than one cord is unknown. When I was asked how much "discomfort" I had, I reported pain and was told "we don't use the "P" word." Several times equipment-- measuring grip strength, degree of contracture, etc. was not available at my appointment and I was told, "let's just say wae took these measurements." Urine specimens -- which supposedly measure Xiaflex in the system -- were taken prior to the injctions-- not after. Many of the doctors running the studies are "consultants" to Auxillium. On top of all this--after less than a year, my finger was back to pre-Xiaflex stage-- you could not tell I'd had it AND my other hand-- which had no contractures eligible when the study started had 5 contractureres--severe ones at that. According to auxilliary personnel at the research site-- PT, study coordinator-- they found Xiaflex less than 50% effective with PIP contractures-- I'd love to see what was submitted to FDA. .

Xiaflex is purposted to cost $5000 per finger whereas NA is under $1000.One of the purported values of Xiaflex is that it lasts longer than conventional surgery-- how do they know when there have been no followup studies and the orignal studies only lasted a year or less?

NA is a one shot deal - not 2X or 3X. NA, in the hands of a skilled practitioner, can work on the PIP joint, even when seriously bent (mine was at 90-95 degrees). NA cost ~$700-800 per finger. In my case, the numbing injections (multiple) did indeed cause pain - significant pain. But my take on it was the doctor wanted me sufficiently numb so that he could do whatever was necessary to break the cord (or cords) causing the contracture without the patient (me) resisting or experiencing pain during the actual "procedure" itself. Once the numbing injections were completed, I felt no (zero) pain or discomfort, the doctor was able to do what was necessary to relieve the contracture, and the result was both a successful outcome and a highly satisfactory overall experience.

Moondanc,

I didn't mean to imply that NA necessarily lasts forever or that DC does not reoccur. My point was that for a given "event" you only need to do NA one time vs. 2X (or more) for Xiaflex. Sorry to hear about your reoccurance and continued battles. Good luck to you! I too have other signs and symptoms (new nodule) so I'm by no means "free and clear" forever but at least the original NA is holding up (almost 3 years ) thus far and required only one medical "event" (plus PT follow-up) rather than 2 or 3.

Moondanc/Diane,

RE: "I'm now pursuing radiation therapy for both hands--will start with my RH, then have NA on my left hand--ring finger MCP, index and middle fingers--both MCP and PIP and possibly PIP on my little finger and my palm looks like a mine field--and then after completion of NA, radiation therapy for my left hand."

Do you know anyone who has had NA after RT? I don't see why it would make any difference so far as NA, but I just haven't heard of NA after RT. More cording developed in my thumb between NA in March and RT in July. Reduction of nodules and easing tightness of cords has continued continued to improve, but I don't expect it to completely take away the nodules or cords. My thumb isn't bad enough that I would do NA again. Besides, the whole MCP joint of my thumb is enlarged. I've been told by my doctor that it isn't arthritis.

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Moondanc/Diane,

RE: "I'm now pursuing radiation therapy for both hands--will start with my RH, then have NA on my left hand--ring finger MCP, index and middle fingers--both MCP and PIP and possibly PIP on my little finger and my palm looks like a mine field--and then after completion of NA, radiation therapy for my left hand."

Do you know anyone who has had NA after RT? I don't see why it would make any difference so far as NA, but I just haven't heard of NA after RT. More cording developed in my thumb between NA in March and RT in July. Reduction of nodules and easing tightness of cords has continued continued to improve, but I don't expect it to completely take away the nodules or cords. My thumb isn't bad enough that I would do NA again. Besides, the whole MCP joint of my thumb is enlarged. I've been told by my doctor that it isn't arthritis.

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