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04/18/2013 20:25
Brian_PDX 
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04/18/2013 20:25
Brian_PDX
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Re: Personal experience
Diane,
Sorry I wasn't clear on my question. My thought is to compare the success of Xiaflex on people who have had surgeries directly to Xiaflex treatment on people who have not had surgeries. Two different groups of people given Xiaflex. They already have data comparing Xiaflex to surgery. I am told the Xiaflex people believe there is a difference in success rate depending on whether or not you have had surgical intervention or not, primarily due to the scar tissue interfering with breaking of the cord.
Please ask them this question if you feel comfortable. I think it's very important to set up a sequential regimen of recommended treatments for our shared malady.
My hand and finger hurt like hell today too if shared pain and experience are any help. I am going to ice pack it again.
Good luck!
Brian
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04/18/2013 22:22
moondanc 
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04/18/2013 22:22
moondanc
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Re: Personal experience
Brian_PDX:
Diane,
Sorry I wasn't clear on my question. My thought is to compare the success of Xiaflex on people who have had surgeries directly to Xiaflex treatment on people who have not had surgeries. Two different groups of people given Xiaflex. They already have data comparing Xiaflex to surgery. I am told the Xiaflex people believe there is a difference in success rate depending on whether or not you have had surgical intervention or not, primarily due to the scar tissue interfering with breaking of the cord.
Please ask them this question if you feel comfortable. I think it's very important to set up a sequential regimen of recommended treatments for our shared malady.
My hand and finger hurt like hell today too if shared pain and experience are any help. I am going to ice pack it again.
Good luck!
Brian
I was in the first trial at Stanford in 2007 and I no longer have access to followup trial personnel or anyone else and I'm really sorry I did Xiaflex because when I started I had DD in only one finger, one hand and now I have it in both hands, eight fingers and I've met a half dozen other folks, trial participants and others who had the same experience of their DD getting more aggressive after Xiaflex. I had DD for almost 20 years in just that one finger with little progression prior to Xiaflex.
Once again I ask the question, "Why didn't Dr. Eaton use Xiaflex? (I believe he only used it once)" NA can also cause scar tissue and I guess make it more difficult to break the cord but in my case I'd only had one NA previously and breaking the cord after Xiaflex was very simple. Whether it broke far enough apart is the real question since it grew back together in less than a year! And then there's the scar tissue caused by Xiaflex. I'm not quite sure that Xiaflex company is all that interested in comparison trials, plus a good portion of the docs doing the trials are receiving money from Xiaflex as consultants--I think it's a real conflict of interest.
Sorry to hear about the pain you are suffering--it sounds really awful. Keep up that ice!
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04/19/2013 06:06
wach  Administrator
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04/19/2013 06:06
wach Administrator
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Re: Personal experience
To my knowledge there are no Xiaflex studies comparing head to head to any other treatment. The only comparison made so far is to placebo. Of course you can compare results with other studies on, e.g. on surgery or NA, but then the patient groups, the selection criteria, the treated joints, and the definition of recurrence might differ making comparison of data very difficult. Van Rijssen et al. discussed that in their 5-year comparison of NA and surgery. They conclude that collagenase has a higher recurrence rate than surgery or NA http://www.dupuytren-online.info/NA_training_literature.html. Lindau et al. draw different conclusions when comparing results from various papers http://slm-respiratory.com/uploads/media...linical_Use.pdf but seem to ignore the different patient selections and definitions of recurrence.
A randomized head to head study comparing Xiaflex with NA and surgery is clearly missing. That's a pity because by now Xiaflex has been around for a while. Obviously no one was interested in doing/funding comparative studies.
Wolfgang
Correction: A longer term study seems to be starting tight now http://www.clinicaltrials.gov/ct2/show/s...how_locs=Y#locn . This study will compare Xiaflex with surgery and NA.
zinkadoodle:
I don't know if they are tracking successes/failures of Xiaflex compared with surgeries as part of this study. In fact, I kind of doubt it. ...
Edited 04/24/13 14:24
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04/19/2013 11:23
hammer 
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04/19/2013 11:23
hammer
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Re: Personal experience
No matter what treatment you have,OS,NA or Xiaflex if you try to fix your DD it is gonna flare.It might go to the other hand ,it might go to your feet or shoulder.Having had all three treatments,I had flares from all so I don't think one treatment is worse than another when it comes to Dups Flare.Dave
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04/22/2013 06:01
IanHawkridge 
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04/22/2013 06:01
IanHawkridge
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Re: Personal experience
After three sessions of Lava Shell massage, my DD has improved significantly. I would recommend trying massage, before embarking on any invasive treatments. Ian
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04/23/2013 21:41
Vikingorigins
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04/23/2013 21:41
Vikingorigins
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Re: Personal experience
hammer:
No matter what treatment you have,OS,NA or Xiaflex if you try to fix your DD it is gonna flare.It might go to the other hand ,it might go to your feet or shoulder.Having had all three treatments,I had flares from all so I don't think one treatment is worse than another when it comes to Dups Flare.Dave
I agree, this disease seems systemic. Waiting for a systemic treatment or solution.
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04/23/2013 23:42
Brian_PDX
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04/23/2013 23:42
Brian_PDX
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Re: Personal experience
Dave,
Your probably right but I would hope, hope for some breakthrough through research. Does anyone know who is doing research at this time besides the Xiaflex clinical trials?
Brian
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04/24/2013 19:50
aryan
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04/24/2013 19:50
aryan
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Re: Personal experience
IanHawkridge:
After three sessions of Lava Shell massage, my DD has improved significantly. I would recommend trying massage, before embarking on any invasive treatments. Ian
I'd like to back up massage therapy treatment. I'm not sure what lava shell massage is exactly but if its working that's really great. I'm having specialized massage from Stephen Jeffrey in Ealing, London and its been really successful. All the nodules (and I have quite a few on both hands) are flatter and softer and I have hopes that some of them will disappear, Stephen is specially interested in treating early DD with massage and has very specific techniques. I'm really surprised that so few people on this forum have not at least given massage a try. I really wish I had done so earlier before rushing into RT which for me was very unsuccessful,
As a back up treatment, Im now also taping gel sheeting for scar treatment over the nodules at night and that seems to be softening them up too.
aryan
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04/24/2013 21:03
cschieber
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04/24/2013 21:03
cschieber
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Re: Personal experience
I would love to try massage therapy but how do you find a massage therapist that specializes in DD?
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04/24/2013 21:52
Brian_PDX
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04/24/2013 21:52
Brian_PDX
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Re: Personal experience
Aryan,
Very interesting but your DD has to be in an early stage as you noted. If fingers are contracted very far it's going to take something more. Has anyone tried DMSO?
Finding a message therapist for DD would be a challenge. A physician referral from someone who knows DD? Telephone calls to therapists? I don't know but worth a try.
Brian
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