I've begun to think differently about these treatments than I have in the past--I've had seven of them. I've had 1) NA- ring finger RH MCP joint and palm which lasted a couple years, 2) then Xiaflex on that same finger, same joint which lasted a little over a year, 3) then NA again same finger, same joint and palm which didn't work 4)5) 4 months later NA on RH MCP ring finger and palm and LH index and middle finger 6) immediately following the NA I had RT on most of my RH excluding thumb and DIP joints and 7) RT on LH excluding thumb and DIP joints. The last RT procedure was about 19 months ago. it seemed to really help my palms, stopped the itching, softened the hand, stopped cramps, etc.

In the last 3-4 months my DD has started getting extremely aggressive once more. But instead of thinking about it as none of the techniques working, I started looking at it in a different way. I now have DD on 6 of my 8 fingers. But the original RH ring finger MCP joint( where I had several NAs and Xiaflex) and cord from the palm to that finger has not reconnected. However, my pinkie finger next to that finger is horribly affected. It's almost like there's a dead zone in my palm that leads to the MCP joint and there's no DD so it's moved over to my pinkie finger which has been contracting about 5-10 degrees per month for the last couple months affecting both MCP and PIP joints. I also have cords up the sides of the NA and Xiaflex treated finger which is affecting my MCP joint. My left hand is a disaster also with cords up the sides of 3 fingers on that hand and corresponding MCP and much worse PIP contraction and several large lumps. I'm left to wonder if the RT did indeed help prevent cords from forming on the front of my fingers. Most folks don't write much about cords up the sides of their fingers and so I'm curious if they occur in others.

I'm going to have to visit Dr. Eaton again very soon and I'm super concerned about the new aggressiveness of my disease. On of the strange things-- which I KNOW cannot be connected-- is that after a course of oral steriods a few months ago my disease started getting even more aggressive. I know this can't be connected--can it?- since I've had several steriod/Kenalog injections after NA and it is commonly used as DD treatment.

I think I'm beyond the point of thinking about more RT even if I could get Medicare to pay for it. Any comments on what I've written above?

Moondanc

flojo:

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Is there anything weirder than this disease???

Diane and Flo,

I'm sorry that you are both facing additional progression of this "WEIRD disease". I guess I feel lucky, so far, in comparison... as my left hand is "holding" after the RT I had in Nov. 2009...my right hand pinkie is another story. Its back to its original contracture in spite of two NA's. But I guess my luck is that since the pinkie has a "boutonierre" contracture, (where the tip is bending upwards) , and the PIP is bent in the other direction, its preventing the finger to bend further into the palm. If it doesn't progress, I will leave it alone for now.

I too, am undecided about Xiaflex, from reading so many negative posts about the reactions and side effects. Also, the only cords I have are from the thumb tothe index finger, on both hands...the rest of the palms have just nodules, unless there are cords deep inside that I cannot see or feel. Since its not affecting the use of my thumbs, I am leaving it along for now.

It doesn't get any weirder.....

callie:

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Does Dr. Denkler do any surgery? And, has he suggested that option? In my situation I had a fasciectomy and all of the Dupuytren's affected tissue was removed and some of the neighboring tissue. I have had zero negative effects from this and after almost 10 years now the finger remains as good as before the Dupuytren's. I think that the removal of all of the affected Dupuytren's tissue was significant.

I guess my question would be is Dr. Denkler still doing surgery (fasciectomies) for Dupuytren's, or is he doing NA and Xiaflex exclusively? It seems that the mention of Dr. Denkler on this forum is only about NA and Xiaflex. If he is doing everything, I would be interested in what his criteria is for determining each method. Does he leave it up to the patient to decide, or does he greatly influence the decision.