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12/18/2011 03:48
hammer 
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12/18/2011 03:48
hammer
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Re: Xiaflex marketing and discounts
It doesnt rally matter what road you take with dd it always comes back and it always comes back tighter and thicker cords.Ive had 5 surgeries and the only one that has lasted is the fuse job on my pinky,might have to fuse them all one day.There is no cure as of now and probly none in my lifetime.Ill just keep releasing them and hope something comes up that is a permenent cure.Ill try them all just to say I did.The only one I havnt tried is radiation and im to far gone for that.
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12/18/2011 07:28
wach  Administrator
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12/18/2011 07:28
wach Administrator
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Dupuytren's starting after surgery
Sounds like that for you every surgery is triggering new Dupuytren's. That being the case it might be better to go for minimal invasive treatments , like NA or enzyme injection, and/or radiotherapy. A member of the Society (from Australia) had a similar issue and about 25 hand surgeries, including several skin grafts. The disease came back every time and quickly. He had his hands then treated with radiotherapy and has now been stable and happy since, I believe, four years. This, of course, is anecdotal stuff, no proof that it will work on each and everyone like that, but RT did a good job for him.
Wolfgang
altoclef:
This thread and the "After Xiaflex" one are kind of going in the same direction. The information in the other thread about possible systemic problems with connective tissues is scary stuff. (My husband is among the tiny percentage of folks who have survived an aortic dissection. Trust me, that's one medical nightmare you wouldn't wish on anyone.) I have wondered, since the stereotype of Dupuytren's patients is that we are old, what the potential is for Xiaflex-related problems years down the road. Someone who gets the drug in their 40s or 50s has many more years to live with the risks than someone who is 70 or 80 at the time of treatment.
I'm not a candidate for the stuff, as my doctor says it's out of the question because the areas I would need treated would take four or more vials of it- who has that kind of $$$ in any case? My disease is quite aggressive. My hand was absolutely fine a year ago when I had trigger finger surgery: I had significant nodules, cords, and contracture less than three months after that, and even more cropped up after a fasciectomy in May. It sounds like X can be even a better trigger than surgery or other trauma in susceptible people. I hate to think what shape I could be in had I tried it after reading what others here have said.
Edited 12/18/11 09:29
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12/18/2011 08:19
wach Administrator
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12/18/2011 08:19
wach Administrator
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Re: Xiaflex marketing and discounts
Hi Diane,
for the time being the rules for using Xiaflex are fairly restrictive (eventually they will surely loosen up). It ought to be a clearly prominent cord, preferably prominent in the palm and contracting a MCP joint. Those are the easiest cases and typically NA could deliver the same results. Considering cost and side effects Xiaflex needs to offer a definite advantage over NA to make it attractive. The hope is that Xiaflex provides a significantly longer recurrence period than NA (and there is some indication of that http://www.ncbi.nlm.nih.gov/pubmed/20353858 but only for a few and early cases). If it doesn't and - on an average - the recurrence after Xiaflex is not later or even earlier than after NA, then Xiaflex might become a treatment for special situations only, certainly something that it is not intended for.
I would think that the first patients on the trials were probably picked and were those where it was most likely that the injection would work. Therefore long-term results of the first patients might not be representative. I agree with you that the long term effects of Xiaflex need to be studied over a longer period of time and that it would be desirable to compare it objectively with the outcome and side effects of NA over a longer period of time and for a random group of patients. Eventually these data will certainly become available but I am afraid probably not within the next few years.
When considering recurrence it might be useful to also check whether the cord actually ruptured or was only stretched. Both might result in an initially straight finger but it might be that the stretched cord contracts earlier than the broken one.
Collagenase pharmacokinetics have been researched and results have been published, e.g. in Trial IIB, http://www.dupuytren-online.info/downloa...ical_target.pdf. The statistics in the fig. 8 are not exceptionally good but it seems that collagenase is pretty much gone after one day. I guess that's why it is recommended to wait for 1 day before straightening the finger. From my personal collagenase experience I think that it worked longer but that might be side effects, like inflammation and swelling causing this impression. Something which I never quite understood is Fig. 4, which indicates that the full effect of collagenase is after 2 weeks. At least results seem to improve over the first 2 weeks. Why is that if collagenase is active only 1 day?
In any case the results of the various treatment options need to be discussed and published and until we get statistically and scientifically sound results this forum is a good place to discuss these treatments.
Wolfgang
moondanc:
... The problem I see is not that Xiaflex may be as successful at "breaking" cords as is NA-- the problem is 1) does it last as long as NA (remember the original criticism of NA was that it didn't last as long as surgery but now Xiaflex is being compared to NA in terms of duration) and 2)what are the long-term effects of Xiaflex-- a foreign substance put into the body that causes 90+% of patients injected to immediately have swelling, pain, etc. I want to see the studies that show how long Xiaflex antibodies remain in the blood, how long PIP joint Xiaflex straightening lasts, etc
There's a reason Xiaflex can only be used once every 30 days! Remember these trials were conducted on a VERY limited number of patients-- US CORD 1, final FDA approval study-- only 308 patients. I've had contact with five of them who say if they'd known then what they know now they'd NEVER have gotten Xiaflex injected into their bodies mainly because of "Dupuytren flare"-- or what they perceived as a rapid acceleration of the disease.
Remember Xiaflex has only been on the market about 20 months, not nearly long enough to measure long-term effectiveness on a large number of patients. I hope some of the doctors who are using Xiaflex in lots of patients will at least be able to report informally
...
Edited 12/18/11 10:22
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12/18/2011 16:23
LubaM. 
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12/18/2011 16:23
LubaM.
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Re: Xiaflex marketing and discounts
Wolfgang and Diane,
First of all, thank you both for the "long and detailed" posts about Xiaflex with regard to marketing, side effects, trials information, etc... I also appreciate everyone else's input.
To put it in simple terms... first of all, Xiaflex has only been on the market for a short period of time, many have had adverse reactions and we don't have actual proof that it is better than NA with regard to recurrence. Was there enough data before approval by FDA? Results, so far, seem very disappointing to me.
If I had two NA's on the same PIP joint of pinkie finger with quick (less than 6 months) recurrence both times, is there a good chance I would get the same results with Xiaflex? Also, there is no cord pulling on that finger, just nodules on the palm.
DD is so "weird"... and so different from one person to the next !
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12/19/2011 03:30
flojo
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12/19/2011 03:30
flojo
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Re: Xiaflex marketing and discounts
Moondanc,
Thank you for your input. Your analysis and explanation was clear and helps the rest of us as we look at treatment options. I think it will be another 2 years or so before I need NA again or Xiaflex as an alternative.
I am taking note of all that is said about. Like you, I hope all practitioners will record results for research purposes.
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