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Why waste time with Xiaflex?
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12/17/10 18:07
TheClaw

not registered

12/17/10 18:07
TheClaw

not registered

Why waste time with Xiaflex?

With the cost of Xiaflex so high, why not just get NA? I had NA, both hands, did 4 fingers and both thumbs done for less than $4k(Dr Kline). So why take the risk with Xiaflex at an even higher cost? With my Athena HMO(in Calif), they wont cover either(or Radiation), but will OK open hand surgery in both hands at over $12K, but I did that 18 years ago and will not let them do open surgery, unless its to completely remove a finger, which just might be in my future as my left little finger is pulled tightly into my palm and has been for over 3 yrs now. I also have slight onset in both feet. Totally sucks that there are treatments out there, but either I cant afford them, or Insurance will not approve. Im 50 years old, if my DD advances as it has in the past, I will be totally disabled before 60. And my DD is extremely painful, The only relief I have found is a mixture of DSMO and vitamin e applied topically. But I'm not sure of the side effects of long term use, so I use it sparingly.

12/17/10 19:09
ellenpao 
12/17/10 19:09
ellenpao 
Not a waste for some of us!

Sometimes NA just doesn't work long term - especially for someone with long-standing disease with frequest re-ocurrances. I have had NA 4 times on a finger, and it comes back with a vengence. Xiaflex is a godsend for those of us who have exhaused all other options (othen than open hand surgery which I would never do). I personally can't wait for my injections in January.

12/17/10 20:21
TheClaw

not registered

12/17/10 20:21
TheClaw

not registered

Re: Why waste time with Xiaflex?

So Xiaflex is lasting longer than NA? Is there proof of that anywhere? Thanks

12/17/10 20:45
callie 
12/17/10 20:45
callie 
Re: Why waste time with Xiaflex?

ellenpao,

You said, "open hand surgery which I would never do". Why wouldn't you have a fasciectomy? As far as surgeries go it is not that extensive and generally without much pain. My surgery (90 degrees contracture) was nine years ago and my hand still has zero signs of Dupuytren's.

12/18/10 00:30
patandpaula 
12/18/10 00:30
patandpaula 
Re: Why waste time with Xiaflex?

Hi Callie,
I thought fascietomy (sp) was open hand surgery? What is the difference? Thanks,

Paula

12/18/10 04:06
jimh 
12/18/10 04:06
jimh 
Re: Why waste time with Xiaflex?

I've had 2 surgeries. I'm scheduled for NA this Wednesday, because I don't want another surgery. But and while the surgeries were not fun, they basically worked, and there's been no recurrence in those areas after 15 years (I'm now 59). The surgeries weren't painful, the issue is just that recovery is long and tedious. Surgical techniques do improve, and some surgeons use a less invasive approach than others (smaller incisions) depending on the area.

Edited 12/18/10 04:07

12/18/10 06:16
callie 
12/18/10 06:16
callie 
Re: Why waste time with Xiaflex?

patandpaula,

There is no difference.

12/19/10 18:26
LubaM. 
12/19/10 18:26
LubaM. 
Re: Why waste time with Xiaflex?

ellenpao:
Sometimes NA just doesn't work long term - especially for someone with long-standing disease with frequest re-ocurrances. I have had NA 4 times on a finger, and it comes back with a vengence. Xiaflex is a godsend for those of us who have exhaused all other options (othen than open hand surgery which I would never do). I personally can't wait for my injections in January.
I would be interested to find out how you do with Xiaflex versus NA... please post your results on this forum after the injections and if possible, please keep posting long term results.

I've had NA twice on the same finger, four years apart. Both times the contracture returned after six months, I wouldn't say "with a vengence", but to the same degree of contracture as before NA. I believe, that for me the rate of recurrence indicates that I should try "something else", but I am waiting for more data on long term results of Xiaflex to go that route....

Edited 12/19/10 18:26

12/20/10 14:58
ellenpao 
12/20/10 14:58
ellenpao 
Answers to why no open hand surgery

My mom and dad both had the open hand surgery, and were never really the same - after long, long PT - and then reocurrances. While I realize that it works well for some, I personally would never go that route. My choice.

I certainly will post the results of my Xiaflex injections. I'm hoping to get longer-term results on that finger with this.

To clarify, I have dups in both hands - middle finger on left hand stayed stable after NA 4 years ago - very slight reocurrance. Middle finger on right hand however is the problem child. Severe reocurrance after 4 NA procudures. That's the finger (palmar cord also) that will be injected in January.

I think that NA should ALWAYS be the first thing that one tries - no harm/no foul, and it usually works well.

I'll try to remember to keep everyone posted on the results.....

12/20/10 19:43
David26

not registered

12/20/10 19:43
David26

not registered

Re: Why waste time with Xiaflex?

@TheClaw:
So Xiaflex is lasting longer than NA? Is there proof of that anywhere? Thanks

There is a hint here. http://www.aaos.org/news/aaosnow/oct10/clinical2.asp


Dr. Eaton: The other issue is what happens when someone has a recurrence after receiving treatment. Early on, there was concern that the collagenase would cause a gross architectural change and make surgical exploration difficult. But the few reports of patients who have had recurrences after an initial collagenase injection have been very favorable.

In contrast, the scar tissue that forms after needle aponeurotomy can be extensive and I suspect may be closer to the kind of scar tissue that forms after a fasciectomy. That in itself may be a long-term advantage in terms of the recurrence timeline between the two procedures.

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