Xiaflex not available in Canada: what else could be used instead? |
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04/07/2025 15:07
mikes
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04/07/2025 15:07
mikes
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Re: Xiaflex not available in Canada: what else could be used instead?
My understanding and experience is that NA can be very effective when in the hands of an exceptionally skilled practitioner even when the contracture is advanced. In my case (maybe I was just lucky) a 95 degree contracture in a small finger PIP was reduced initially to 20-25 degrees and even more wonderously after several years of concerted splinting became flat. It has remained flat now (knock on wood) for many years. Of course I now have some smaller contractures in fingers on the other hand.
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04/07/2025 22:48
dupynz
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04/07/2025 22:48
dupynz
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Re: Xiaflex not available in Canada: what else could be used instead?
mikes: My understanding and experience is that NA can be very effective when in the hands of an exceptionally skilled practitioner even when the contracture is advanced. In my case (maybe I was just lucky) a 95 degree contracture in a small finger PIP was reduced initially to 20-25 degrees and even more wonderously after several years of concerted splinting became flat. It has remained flat now (knock on wood) for many years. Of course I now have some smaller contractures in fingers on the other hand.
That's really good news! Quite frankly, I don't know anything much about NA apart from my not-great experience, so I make broad unfounded assumptions! Likewise, just because I know 2 people who had great results from collagenase injections for a while but ended up having surgery, I've tended to assume it's only a stop-gap measure, but from what I read it has lasting positive effects for many. Timing and skill are quite important.
I've tended to believe medics telling me my only option is surgery by the time I present to them. And in fact the fingers that were operated on have remained straight (so far!)
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04/10/2025 20:29
Katbel
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04/10/2025 20:29
Katbel

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Re: Xiaflex not available in Canada: what else could be used instead?
Update
First of all thanks to all of you for the tips and support ☺️ Last Monday I’ve seen the radiologist, very nice person 💗 but she suggested to see a hand surgeon if I can find one, before doing the radiation . Mostly to have a second opinion because, only radiations will not resolve completely the finger bent I have. Now I’m looking to find someone and maybe, thanks to my family doctor, we found one but I’m waiting to hear an answer for “when” it will happen.
I have two questions for the ones among you who had the radiation Can you use your hand during the cycle of 5 days? I mean: driving, walking the dog etc Second: does it hurt?
I had a list of questions for the doctor, but those weren’t there yet…and now I’m thinking if I need my husband to come with me and the normal day routine after the radiation , like using the hand washing etc..
The doctor told me I could feel tired.
Thanks !
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04/11/2025 06:46
spanishbuddha  Administrator
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04/11/2025 06:46
spanishbuddha  Administrator
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Re: Xiaflex not available in Canada: what else could be used instead?
You can use your hands in the week after RT for most things, but no rough handling. Driving is fine, DIY, hard housework probably not. Use gloves if concerned. I would worry about walking a large dog with a leash, although it might be ok, but perhaps use a waist leash. I played tennis the second week after. There should be no pain, maybe some tanning will develop, use a high urea cream overnight or whatever is recommended as dry skin can develop. Hopefully your radiologist will give you a list of things to expect and do; for most people it's a non-event, but some feel tired and some get more severe short time side effects.
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04/11/2025 12:31
Katbel
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04/11/2025 12:31
Katbel

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Re: Xiaflex not available in Canada: what else could be used instead?
spanishbuddha: You can use your hands in the week after RT for most things, but no rough handling. Driving is fine, DIY, hard housework probably not. Use gloves if concerned. I would worry about walking a large dog with a leash, although it might be ok, but perhaps use a waist leash. I played tennis the second week after. There should be no pain, maybe some tanning will develop, use a high urea cream overnight or whatever is recommended as dry skin can develop. Hopefully your radiologist will give you a list of things to expect and do; for most people it's a non-event, but some feel tired and some get more severe short time side effects.
You are amazing! They should give you a medal 🎖️ for all the support and help you have been given since so many years Thank you so much!
Katbel
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05/05/2025 14:12
Katbel
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05/05/2025 14:12
Katbel

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Re: Xiaflex not available in Canada: what else could be used instead?
Hi, An update I’m still waiting for a hand surgeon to contact me. My radiologist doesn’t want to proceed without a hand surgeon seeing me first. I’m in a limbo sigh. I hope he will decide for a needle aponeurothomy Now the hand surgeon has been contacted by both the radiologist and again by my family doctor. Patience is a virtue…….that sometimes is running low 🙂 But there is worse in life, I know.
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05/15/2025 23:16
Katbel
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05/15/2025 23:16
Katbel

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Re: Xiaflex not available in Canada: what else could be used instead?
Update: today I finally saw a hand surgeon who told me he can do a needle aponeurotomy in 2 or 3 months..waiting list. He doesn’t recommend radiation after neither a splinter, i just should work to keep my hand flat. Didn’t explain too well why.
The radiologist instead told me to do radiation not only to the right hand but to the left as well, where I have 2 nodules but the hand is super flat.
Not sure what should I do. Any thoughts?
Thanks
P.s. the surgeon told me he will break the cord under local anaesthetic and steroids.
Edited 05/15/2025 23:22
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05/16/2025 06:52
spanishbuddha  Administrator
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05/16/2025 06:52
spanishbuddha  Administrator
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Re: Xiaflex not available in Canada: what else could be used instead?
Katbel: Update: today I finally saw a hand surgeon who told me he can do a needle aponeurotomy in 2 or 3 months..waiting list. He doesn’t recommend radiation after neither a splinter, i just should work to keep my hand flat. Didn’t explain too well why.
The radiologist instead told me to do radiation not only to the right hand but to the left as well, where I have 2 nodules but the hand is super flat.
Not sure what should I do. Any thoughts?
Thanks
P.s. the surgeon told me he will break the cord under local anaesthetic and steroids.
Whether to have RT or not is a judgement call as it is only effective during a particular phase of disease progression. You will read about people saying it must be 'active'. Some signs of this are current soreness, recent (as in maybe last 3-6 months) changes in nodules, dimpling, cords, tingling, itching, crepe like feeling as the hand are used or stretched, and so on. It varies from person to person. People are usually aware of ongoing or current changes but the difficulty is the disease also seems to go through cycles of activity and then dormancy and then repeats. In many cases it's a one chance of treatment only (although it can be half repeated in some cases), AND also since it's only effective at the 'active' stage it should therefore only be done if so warranted. See the item 'to treat or not to treat early' in this list and there are also guideline assessment forms that may be useful. Maybe you can ask for a tele-consult with ProfS? https://www.dupuytren-online.info/Forum_...1553463816.html
I have not had NA so can't comment based on experience, but do have in one hand some cords in the palm that are tight, but there is imperceptible contracture just loss of flexion, so I'm holding off on that for now. Where is your cord and how much is the contracture? Experienced surgeons doing NA use a modest amount of local anaesthesia since they want you the patient to tell them if the needle is getting too close to a nerve. Maybe ask about that? But otherwise a mix of local (not nerve block) and steroid seems to be the way. I don't think we have good evidence on splinting after NA or surgery. Some people and surgeons swear by it others not. I have read that 'compression' splinting after NA\surgery can help if ther are signs of the contracture returning during the healing phase. If I had NA I would probably splint for a few months at night of the basis of "well what harm can it do"?
Best wishes, keep us updated too SB
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05/16/2025 14:02
mikes
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05/16/2025 14:02
mikes
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Re: Xiaflex not available in Canada: what else could be used instead?
I am the beneficiary of a very successful NA process on the small finger PIP 90 degree contraction. 1. To the extent possible, ensure that the doctor is really good at it as NA seems to be as much an art as a science. 2. Prior to inserting the needle, I was given maybe 8-12 numbing injections that began as a bee sting level of pain and increased up to the last one (very very painful). However, during the actual NA procedure there was no pain at all and I could feel/hear cords snapping. No significant pain post-procedure. The doctor suggested I find a hand specialist PT which I did and went a few times/week for as long as insurance permitted - maybe 8-12 weeks or so. That seemed to help. I wore a custom splint made by the PT all the time for a few months (PT made several as the old one(s) wore out) followed by wearing it at night 7 days/week for a year or so, then 5 days/week for a year or so and finally gradually discontinuing.
Somehow (very fortunate) it all worked.
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05/16/2025 17:22
Katbel
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05/16/2025 17:22
Katbel

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Re: Xiaflex not available in Canada: what else could be used instead?
Thank you so much to both of you for your detailed responses and useful advices. The surgeon seems a good one,” he specializes in upper extremity reconstruction, aiming to restore function from shoulder to hand.” So I read Crossing fingers And as said from both of you I will use a splint , no harm Now I have to wait until someone calls me. He didn’t specify if he will cut the cord in one point only.
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