Hi all, have been away from the forum for awhile as the excellent Dr. Denkler was keeping my disease in pretty good check with occasional steroid shots and a little needle here and there. But a bunch of new nodules in right hand (for years it was just in the left) and a little more bend in left pinkie made Dr. D suggest using xiaflex. He used it a little differently as i just have one finder thats about 20 degrees and holding pretty steady for some years. But have a bunch of new nodules in right hand so he recommended using a dose of the enzyme on those as well as on the origional pinky site as a way to keep disease from progressing. The idea is to use the drug to eat away at some of these growths to keep the disease in check. So its a little different than what the xiaflex web site suggests. Anyway, I got the drug shot into 10 spots on both hands. Got a pretty good dose of local anesthetic so i could drive myself 5 hours home. Next day was a little painful and some swelling, but today is better. Oddly, the day after I felt sort of queasy and slept most of the day but could be because I had a long tiring trip doing other things before going to get the shots.

Dr. D was, as always super kind and professional and I am very hopeful that this will help keep this disease in check. But Dr. D had kept me from major surgery for years so gotta trust the guy.

My insurance does cover this though my deductable is so high i had to pay for it but at least get the ins discount.

I will be posting again in a few days or weeks about how this is working out. Of course the real test is how things look in a year or more. I am curious if anyone else has gotten the drug in this manner - not so much to release a contracture but to get rid of bits of the stuff to slow the overall process. DianeS

The Healthwell Foundation may be able to assist with your co-pay :(http://www.healthwellfoundation.org). Good luck!