Seph, it's been 10 years or more since the initial onset of the DD in my right hand, and there's been nothing since. The left hand has been different, although only one of the three fingers has taken off---and that's been the pinky. And most of that has been since the xylaflex. If NA works---even if it has to be repeated every couple of years, I'll be happy. I wonder which one of my ancestors got into it with the vikings..............:)

Bentfinger, I am thrilled for you. I hope it stays straight and that the PT keeps it that way. I figure the trials of xylaflex worked for the vast majority....and I hope it keeps your fingers straight!! Congrats!!!!

Thank you for this summary, moondanc! Those interested in the Xiaflex trials and studies find some of it on

http://www.dupuytren-online.info/dupuytr...literature.html

Time and trials will tell whether Xiaflex provides a longer recurrence period than NA. In cases where a section of the cord is dissolved Xiaflex might be better than NA, but that's something yet to be proven. Xiaflex also changes the elasticity of the cord and it might be that some of the treated cords don't break but are extended. In those cases recurrence might (!) be faster than with NA but, again, this would need to be researched.

Wolfgang
PS: The outmost joint (DIP joint) is rarely affected by Dupuytren's. In their 2002 trial Badalamente, Hurst and Hinz report 1 DIP joint affected in 80 patients.

moondanc:

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There's no question that Xiaflex worked fairly well in the trials for the MCP joint (the joint closest to the hands). It was much less successful-- 50%-60%?? not sure-- with the PIP joint--or the knuckle joint. Xiaflex is just a chemical way of "snapping" or "breaking" the cord in the same way that NA does--nothing more, nothing less (in some cases with a skilled surgeon Xiaflex can be used in places inaccessible to NA). It doesn't dissolve or eliminate the entire cord and there's just as much chance of the cord growing back together as with NA. The followup studies from the Xiaflex trials do NOT involve that many patients and the long-term success rate is NOT wonderful and because in many of the patients, Xiaflex was not successful and they went on to try NA--the results can be skewed AND many of the doctors who conducted the trials are consultants to Xiaflex.

Furthermore, there are reports-- I know at least a dozen people to which this happened--of folks who received Xiaflex and found their disease becoming very aggressive within a year of the injections. I certainly would wait until there are long -term trials of many patients who have received Xiaflex before saying it works and especially that it works any better than NA. Read the trial studies for yourself especially with regard to the PIP joint.

Moondanc

You have been misinformed, or you are misinterpreting what you heard. I have never heard of anyone in the medical field (concerning Dupuytren's) advising to wait "until it is a stage 3 or 4 before any real intervention".

You said, "I am amazed that with ALL the advancements in medicine that there is a medical condition that the standard of treatment is to wait until it is a stage 3 or 4 before any real intervention.

mobaygirl,

I highly recommend Dr. Keith Denkler in Larkspur, CA, in Marin County which is connected by the Golden Gate Bridge on the west side and the Richmond bridge on the east. It is easy to drive to from Oakland airport or San Francisco airport.

You can find him listed in the list of doctors and clinics. He is a hand specialist, did only surgeries until he found out about NA. He is very experienced and passionate in studying about DD and treating it.

If it is reasonable to go to see him, it would be good. If that is not possible, email him with pictures of your hand and description of your symptoms and condition. He will email you back with his thoughts. He's is more than willing to help you as much as he can from a distance even if you to not use him as your doctor.

Thank you so very much for the info Flojo! I will check him out and shoot him an email.

Steph, I know it was such an unreasonable and I believe uninformed response from my Dr. I have an appointment on the 24th with the Chief of orthopedic hand surgery. I am praying he will be willing to take a proactive stance on the treatment of DD. I am however prepared to seek treatment outside my HMO if their standard of care is to do NOTHING until I have full contracture of my ring finger and pinkie. I believe from the accounts I have read here and by looking at photos that I am a perfect candidate for RT, which my HMO does not even offer. I am praying for a good appointment with this next doctor.