Wolfgang, The incidence of male-female relative to age makes some sense. I hadn't realized it until you mentioned it, but it does seem like those getting it early are mostly men. My onset was age 69 which fits the "old ladies" category. I guess there is research out there about it, but it doesn't tell us much more at this point until we know what Dupuytren's is all about anyway.

Did you have a successful experience in the trials? NA is a fraction of the cost and, in my opinion, is less invasive.

Insurance coverage is so frustrating on so many levels. Who do we lobby? Where would we start?

Sandy,

My trial experience worked out fine. I had about a 25 degree contracture of my right hand middle finger. The cord is in my palm. The trail consisted of up to three injections. Unfortunately I received the placebo all three times. After the trial ended I was able to receive the Xiaflex. I received the injection into three parts of the cord (you will know immediately that you received the drug and not a placebo - redness, swelling, and in my case bruising up my arm to my arm pit). The next day the physician was able to tear the cord at one of the injection sites. Two tries (some pain & discomfort). It is an interesting experience in that you can hear the cord tear from across the room. It sounds something like the sound you would make cleaning out the seeds and strings from a pumkin. The finger staightened out completely (some tenderness for a couple of weeks) and is still straight almost two years later.

I have two other cords in my right palm leading to my ring finger and little finger, but at the time the contractures weren't enough to receive any more injections and manipulations. As they have slowly contracted in the last two years I am probably close which resulted in my calling the clinic to get the update. If insurance covered it I probably would have gone in for injections again. I have good insurance (no deductible or co-insurance, just an office visit co-pay).

I have read on this site that there is a physician at the Mayo Clinic in Rochester who does NA. I will check him out.

Lars

jimh:

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Lars, I also live in Minnesota. Who is doing Xiaflex here?

The surgeon at Mayo who does NA is Dr. Marco Rizzo. He did NA on my thumb last June and had some success - the contracture was unusual and very difficult. I plan to have him work on my hands again at some point.

A price of $8000 for Xiaflex treatment is laughable and until Auxilium starts to get into reality, Xiaflex will go nowhere.

jimh:

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Interestingly, the MD who did NA on my hand - Dr. Marco Rizzo at Mayo - is on the Xiaflex list. I'll very likely be seeing him again in the future and will ask him if he's actually using Xiaflex and if so what the results are. When I last saw him, I got the impression that he strongly favored NA over Xiaflex.