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04/28/2012 12:38
CharlieK 
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04/28/2012 12:38
CharlieK
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Xiaflex Fail
As someone who suffered with Dupuytren's for many years I was excited to learn that there was drug to treat Dupuytren's. My doctor and I agreed this was the best treatment option for me. Regardless of the treatment method, my high insurance deductible ($5600) meant a huge out of pocket cost to me. Well I recently had the injection followed by manipulation a day later. $4000 later and my contracture is still there with zero improvement. Yes I'm pissed to say the least.
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04/28/2012 15:37
wach  Administrator
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04/28/2012 15:37
wach Administrator
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Re: Xiaflex Fail
Hi CharlieK,
unfortunately success is not guaranteed with any of the available treatments but I do understand your frustration. 4,000 $ sounds a lot for a Xiaflex injection. I had thought it's more in the 1,500 $ range? Does your doctor have a lot of experience with Xiaflex or does he just administer it occasionally?
Not every Dupuytren's finger is suitable for Xiaflex. It seems to work better on base joints (MCP) than on middle joints (PIP) and you do need a clearly palpable cord to inject into it. Which of your fingers was treated and by how many degrees was it bent before the treatment?
Wolfgang
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04/28/2012 16:30
CharlieK
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04/28/2012 16:30
CharlieK
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Re: Xiaflex Fail
Yes he's got regular experience and carefully selective in choosing candidates. So far I'm his only failed case. Chord was quite palpable and so visibly prominent, Stevie Wonder could see it.
Xiaflex cost after the insurance discount is just under $3800 out of pocket. Just frustrated that after saving enough money to finally have this done, it failed.
Edited 04/28/12 19:33
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04/28/2012 16:57
flojo 
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04/28/2012 16:57
flojo
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Re: Xiaflex Fail
Charlie,
I don't know a lot about Xiaflex. Is it possible that delayed results will occur?
I hope something more certain about this disease happens. I'm thinking it will have to be gene therapy and that takes time. Plus, they will probably be working on gene therapy for other diseases first.
I feel for you. I'm so sorry it didn't work out. You did all you could to get the best treatment. We do the best we can with the options available to us now. That's all we can do.
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04/28/2012 17:15
spanishbuddha Administrator
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04/28/2012 17:15
spanishbuddha Administrator
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Re: Xiaflex Fail
Sorry to hear about the lack of success with Xiaflex.
It does seems every case is different. If you look on this forum at, for example user 'hammer' posts, he seems to have had good short term results after quite a severe case.
As Wolfgang has asked can you tell us more: which joint, which finger, have you had other treatment prior, and at which point did it 'fail' - straight after manipulation, or during the recovery then if so how long?
Thanks for sharing anything you can.
Also, I hope you can continue to explore other treatment options? Best wishes, stay positive and fight back.
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04/29/2012 04:34
wach Administrator
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04/29/2012 04:34
wach Administrator
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Re: Xiaflex Fail
Sounds like you were the right candidate! Just curious: did you get one shot or several?
Wolfgang
CharlieK:
Yes he's got regular experience and carefully selective in choosing candidates. So far I'm his only failed case. Chord was quite palpable and so visibly prominent, Stevie Wonder could see it.
Xiaflex cost after the insurance discount is just under $3800 out of pocket. Just frustrated that after saving enough money to finally have this done, it failed.
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04/29/2012 12:48
pia2some
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04/29/2012 12:48
pia2some
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Re: Xiaflex Fail
I'm sorry to hear the injection didn't work for you. I know that must be terribly frustrating after spending that kind of money.
I had one cord injected earlier this month and it was successful. Fortunately, our insurance paid the cost of Xiaflex ($3,465) at 100%. Our portion of the doctor's bill was about $500. It is not a cheap procedure.
Will you consider a second injection or not? Again, I'm sorry it didn't work.
~dawn
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04/29/2012 13:33
hammer 
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04/29/2012 13:33
hammer
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Re: Xiaflex Fail
Sounds like the cord didnt break all the way,its weak right now so keep stretchin the crap out of it.It took 3 injections in my ring finger and there is still acord in my palm.I lay my hand flat on a hard surface an press down on the hand till it flatens out several times daily and splint evrey chance you get.Mine will contract 20-30 degrees thru out the day while i cut meat then when i get home I put my finger sleeve on and my brace and they will strighten back out,its a pain.No pun intended,but it 100 time better then it was and 1,000 time better than my left hand.Maybe try to contact Auxillium.Dave
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04/29/2012 13:38
hammer
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04/29/2012 13:38
hammer
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Re: Xiaflex Fail
Try contacting Brian Dean 512-879-3900 or bdean@auxillium.com he is the contact person for the clinical trials.Give him an earfull .You never know if you dont try.Good luck.Dave
Edited 04/29/12 16:39
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04/30/2012 11:38
CharlieK
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04/30/2012 11:38
CharlieK
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Re: Xiaflex Fail
I have a follow up scheduled and will try it again if recommended by my physician.
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