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Anyone have ANY experience with Xiaflex and Contracture in Toes? Lots of Questions
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09/19/21 06:06
debrr 
09/19/21 06:06
debrr 
Anyone have ANY experience with Xiaflex and Contracture in Toes? Lots of Questions

Hello fellow LDers,

After much searching on forums, I cannot find any mention of Xiaflex with cords. My cords are not inflamed but visible. The nodules were remedied years ago with RT, thankfully. I can feel the cords in both feet pulling on my toes (except for my big toe). The toes are bending downwards, particularly on one foot. I am grateful that Spanish Buddha recommended some podiatrists to me! But I would sure like to know if anyone else has had any experience with Xiaflex for cords and contracture of toes?

Same in my hands - very visible cords and no inflamed nodules/lumps anymore, just rapid contracture of fingers. RT was a Godsend for my large lady lumps and has been for years! Seems to be in rapid growth phase right now and affecting use of my hands and feet. Does anybody know something about the use of epileptic medications and Dupuytrens or LD? I have recently had to take anti-epileptic medication and started to wonder if that is why it seems to be so aggressive?

I would very much appreciate knowing if anyone has ever had this experience in their feet and if so, what methods they used or tried. I'm particularly interested in the possibility of Xiaflex since I don't have lumps/nodules anymore.

I thought that RT is for nodules and Xiaflex for contracture. I also understood that Xiaflex for LD is used "off label". Am I wrong? Sure would appreciate knowing more before contacting a podiatrist. Also guess I could use recommendations for hand doctors in Phoenix, AZ or nearby state, please. Thanks all! My complete trust has always been in this groups recommendations! So thankful for this forum!

09/19/21 09:52
spanishbuddha 

Administrator

09/19/21 09:52
spanishbuddha 

Administrator

Re: Anyone have ANY experience with Xiaflex and Contracture in Toes? Lots of Questions

Wolfgang refers to the link between phenobarbital drugs used for epilepsy in a couple of posts here https://www.dupuytren-online.info/Forum_...tol-0_21.html#1 with links to the US site and references here https://dupuytrens.org/dupuytren-literat...re-medications/. There are alternatives that may be suitable.

For the hands, if clinically appropriate, I would personally consider NA ahead of Xiaflex, and hopefully one of the Drs on our treatment page in Arizona can advise.

My understanding is that Xiaflex is not FDA approved for the treatment of LD so you would have find a Dr prepared to use it off-label and with experience including success in the treatment. Alas I suspect this is a long shot.

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