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04/07/2010 12:19
BobN 
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04/07/2010 12:19
BobN
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Re: Xiaflex information
Diane,
My insurance (BCBSMA) won't pay for anything except OS regardless of what NA can do and my surgeon tells me Xiaflex is very expensive and he has yet to hear if the insurance will cover it. I understand that one injection of Xiaflex costs over $3000 for the Xiaflex and more than one injection is needed. Does anyone know if this is true?
In my mind, Xiaflex accomplishes the same thing as NA ony chemically rather than mechanically. If insurance pays for Xiaflex, what stops them from covering NA too? I will expect a coverage argument over segmented if I ask for that instead of full fasciotomy. I also don't think surgeons will do it but I don't know why.
Bob
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04/07/2010 13:16
flojo 
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04/07/2010 13:16
flojo
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Re: Xiaflex information
Bob, Sorry to hear about your stubborn Duyuytren's. You've had an ordeal. Let us know how things go with you.
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04/07/2010 21:25
moondanc
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04/07/2010 21:25
moondanc
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Re: Xiaflex information
Quote:
Diane and Bob:
Diane, a first long term study of Xiaflex was published recently. Not very many cases tracked, for obvious reasons, and not very definite on recurrence but still a start:
Watt AJ, Curtin CM, Hentz VR "Collagenase injection as nonsurgical treatment of dupuytren's disease: 8-year follow-up." J Hand Surg Am. 35 (2010) p 534-9 http://www.ncbi.nlm.nih.gov/pubmed/20353858
Wolfgang
I find this quite interesting given that one of the authors of the study was the person who told me there had been no long-term "clinical" studies. Perhaps "clinical" is the operative word here. Also, even though my Xaiflex injections didn't last and despite the fact it then progressed from my MCP to my PIP-- in the "initial" study I was considered a success because my PIP joint straightened the next day and the cord released. How on earth they're going to consider me in the 4 year study now since I've had FIVE treatments -- 3 NAs and 2 RTs since the initial study--the FDA only knows. Finally, I've refrained from saying this before but there were a lot of problems during my experience with the FDA trials. They refused to record my report of intense pain saying they didn't use the "P" word. Several times, measuring equipment wasn't available and I was told, "let's just say we did it." There were several other things that happened that were unprofessional and in my experience the study was set up to prove the efficacy of Xiaflex-- PERIOD. Yep, I['m biased.
Moondanc
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04/08/2010 00:26
BobN
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04/08/2010 00:26
BobN
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Re: Xiaflex information
Moondanc: It's important to know that they started Xiaflex trials back in early 2002 [yes - 8 years ago]. I had inquired back then to the folks at Stonybrook NY and the first two centers were in NY and at Stanford in Palo Alto. Since it required multiple visits, I couldn't make the extended trips and decided against it. This leads me to believe that the 8 respondents were in those first trials. They may have been phase I trials (for safety I think).
I find it very interesting that the 2 treated PIP joints had an average of 45 deg contracture when first treated and ended with both having recurrence and now both average 60 degrees. Not very promising for PIP joint sufferers. I still think a segmented approach would keep the collateral damage to a minimum while we manage this disease.
B
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04/08/2010 03:04
moondanc
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04/08/2010 03:04
moondanc
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Re: Xiaflex information
Quote:
Moondanc: It's important to know that they started Xiaflex trials back in early 2002 [yes - 8 years ago]. I had inquired back then to the folks at Stonybrook NY and the first two centers were in NY and at Stanford in Palo Alto. Since it required multiple visits, I couldn't make the extended trips and decided against it. This leads me to believe that the 8 respondents were in those first trials. They may have been phase I trials (for safety I think).
I find it very interesting that the 2 treated PIP joints had an average of 45 deg contracture when first treated and ended with both having recurrence and now both average 60 degrees. Not very promising for PIP joint sufferers. I still think a segmented approach would keep the collateral damage to a minimum while we manage this disease.
B
Bob,
Thanks for your response. I am aware of the Xiaflex trials dating back to 2002. I applied not too many years after that --2004?-- and was accepted and then waited and waited and waited until Auxilium came into the picture and funds were secured. The PT, hand therapists and coordinators in the recent Stanford trials did talk about the PIP problems and less than 50% success and were nowhere near as upbeat as the actual study doctors in discussing the results of the 2007 trials--which they probably weren't supposed to do anyway. I'm sorry, I'm still quite bothered by study doctors who are consultants to Auxillum-- and who have been for quite some time--conducting the trials. I know it's done all the time but that doesn't mean there can't be bias. And I believe--but I could be wrong--even with the 3 trials in the US, there were still fewer than 500 patients overall. Again, no way to prove it--until we have long-term clinical studies but I think there's a possibility collagenase accelerates the disease. I had an MCP contracture in ONE finger when I started the trials, I'd had slow progressing DD--it took more than 15 years to get to 45 degree contracture on my RH ring finger only- and a year after the trials it was in my RH ring finger PIP, my RH little and middle PIP and MCP and three fingers on my LH, including two PIP joints. NOT fun. And the strangest thing is I have 3 brothers, one a heavy user of alcohol and none of them has the disease nor has anyone else in my extended family.
Moon
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04/08/2010 05:58
wach  Administrator
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04/08/2010 05:58
wach Administrator
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Re: Xiaflex information
Diane, to my knowledge Xiaflex is not targeting nodules. Xiaflex is an enzyme that dissolves collagen which is the main constituent of cords but not of nodules. So there are no trials for Xiaflex applied to Ledderhose. There are trials for Peyronie's and Frozen Shoulder because both involve collagen deposition.
Wolfgang
Quote:
... Finally, as far as I know, there have been NO studies where Xiaflex was injected into nodules. I have no idea if that's a recommended use. ...
Best,
Diane/Moondanc
Edited 04/08/10 08:59
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04/09/2010 02:19
flojo
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04/09/2010 02:19
flojo
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Re: Xiaflex information
Moondance - your post:
NOT fun. And the strangest thing is I have 3 brothers, one a heavy user of alcohol and none of them has the disease nor has anyone else in my extended family.
I'm beginning to wonder about the incidence of DD supposedly 5 (or up to 7) males to one female. Maybe more documentation needs to be done. I know I am just one case and you are just one case, but I also have 2 brothers who have no DD and no one knows of/remembers anyone in the extended family who has it except one of my nieces who has a bent pinky joint that I think is DD. My brothers both imbibed alcohol quite heavily for a long time. Just wondering.
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04/09/2010 03:54
wach Administrator
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04/09/2010 03:54
wach Administrator
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MD & male/female ratio
Flojo: I always thought that giving a male/female ration is somewhat misleading. These ratios come from clinics where they count the numbers of their male and female patients and then publish the ratio. But at a closer look you find that men typically get this disease earlier but not more often, see http://www.dupuytren-online.info/dupuytr...stribution.html. The ratio male/female strongly depends at what age you measure. With the age of 40 it might be 8:1 and with the age of 80 it is more in the range of 1:1. For example I inherited Dupuytren's from my mother and developed my first nodule with 35, while my mother was 80 when she got her first nodule. Why men acquire Dupuytren's disease earlier nobody really knows. Personally I believe it is because men usually carry the suitcases ...
Wolfgang
Quote:
Moondance - your post:
NOT fun. And the strangest thing is I have 3 brothers, one a heavy user of alcohol and none of them has the disease nor has anyone else in my extended family.
I'm beginning to wonder about the incidence of DD supposedly 5 (or up to 7) males to one female. Maybe more documentation needs to be done. I know I am just one case and you are just one case, but I also have 2 brothers who have no DD and no one knows of/remembers anyone in the extended family who has it except one of my nieces who has a bent pinky joint that I think is DD. My brothers both imbibed alcohol quite heavily for a long time. Just wondering.
Edited 04/09/10 06:55
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04/09/2010 15:27
LubaM.
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04/09/2010 15:27
LubaM.
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Re: Xiaflex information
I've come to the conclusion that DD is a weird disease...LOL... no rhyme or reason....
It affects everyone so differently, the results of the different procedures (surgery, NA, RT, xiaflex) are different from person to person, or from one hand to another in the same person...it affects young and old, etc. etc...
I got my first nodules in my late fifties, I'm the youngest of 3 sisters...
one of my sisters got it 8 yrs. after me, my oldest sister doesn't have it at all...my parents or relatives never had it. I don't drink, am from russian/rumanian heritage....no vikings in our family... go figure !!!!
This is such an unkown disease (even some doctors don't know much about it)....I say I have "Dupuytrens" and people say "you have what ???"...
Thanks for this forum and the ability to share with others who really know what you're talking about...
Edited 04/10/10 00:58
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04/09/2010 22:59
flojo
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04/09/2010 22:59
flojo
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Re: Xiaflex information
Wolfgang, I like your sense of humor.
Personally I believe it is because men usually carry the suitcases ...
I've noticed that lots of people on this Forumhave a sense of humor. Might as well have a laugh about it. That, for sure, won't make the disease progress faster.
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