Xiapex (3 | Dupuytren | Forum for Dupuytren's contracture

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Xiapex
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02.03.16 15:19
flyfisher66 
02.03.16 15:19
flyfisher66 

Re: Xiapex

Hi all , update on manipulation. Just got home the hand is still numb , I can not remember when my little finger and ring finger looked so straight . No real cracking sound , just a slight "pop" , a little skin tear but not too bad , the hand is swollen . Typing left handed not so good !!

02.03.16 16:27
econn 
02.03.16 16:27
econn 
Re: Xiapex

Thanks for the update. Good to see another successful Xiaflex treatment. Mine was done 1 1/2 years ago and no issues or recurrences. There are remnants of cords in my palm and fingers but no sign of any contracture, in fact I can still hyperextend my hand by about 30 degrees. My fingers make slight clicking sounds when I exercise them, but that's a small price to pay for full use and flexibility of my hand.

02.03.16 19:05
spanishbuddha 

Administrator

02.03.16 19:05
spanishbuddha 

Administrator

Re: Xiapex

Good to hear. Let's hope it settles and once the swelling is down your hand function is back to normal. Do you have physio and splinting lined up?

04.03.16 06:43
flyfisher66 
04.03.16 06:43
flyfisher66 

Re: Xiapex

Back to hospital this morning to change the dressing , then next Wednesday to see the hand therapist for the "night time" splint . There appears to be a national survey in the NHS regarding Xiapex , as pre injections , I had to complete a "questionaire " regarding the condition and numerous measurements of my hand and fingers . At this time I can only say that having had a fasciectomy and now Xiapex treatments I know which one I would prefer . My biggest concern was the possible side effects of the Xiapex , apart from a little bruising , swelling and pain which did not last long , I was lucky !

I have set myself a target date to go fly fishing , although I can cast left handed .

04.03.16 07:43
econn 
04.03.16 07:43
econn 
Re: Xiapex

Sounds good! Happy fishing. Reminds me of an old adage, "Give a man a fish and you can feed him for a day, teach a man to fly fish and he will starve..."

10.03.16 14:46
flyfisher66 
10.03.16 14:46
flyfisher66 

Re: Xiapex

Update , 8 days since the manipulation . The hospital are pleased with the result and obviously I am , I now have zero contracture on my little and ring finger . Only very slightly still bruised , at the injection site . Although I still have a thick cord in another area of my palm , it is not causing any issues yet ( had it a long time now ) . I will probably leave this one alone ( wait and see approach ) . Unfortunately I have a nodule on my left palm , I have yet to discuss this with my hand consultant . I gather that Xiapex does not work as well on nodules as it does on cords ?

01.12.21 09:12
John.W123 
01.12.21 09:12
John.W123 
Re: Xiapex

Hi
I know this post is old now but I was searching fishing and dupytrens and came across it and it is a very similar experience to mine.
I live in UK. 59 yes old and hobbies are fishing and restoring old radios.
Just had a 2nd fasciectomy in left dominant hand which involved skin grafts and is slowly getting better but leaving my middle finger numb and as they were to my palm they are more useable but still half bent.
Still have pinkie finger to do and like you dont want to go through this again but sure it will return.
Want to get back fishing and hoping the numbness eases so will have to be patient. Just glad to be getting some use back. My index finger and thumb are ok ish so these keep me able to do most tasks within reason.
Right hand has nodules but luckily no sign yet of contracture so I have been learning some tasks right handed.
Thank you for your post as it was so similar to me that I felt it was worth a response knowing that my scenario has been had by others
Horrible disease that is a lottery and somewhat life changing and not talked about enough.
Cheers
John

01.12.21 09:23
spanishbuddha 

Administrator

01.12.21 09:23
spanishbuddha 

Administrator

Re: Xiapex

John.W123:
Hi
I know this post is old now but I was searching fishing and dupytrens and came across it and it is a very similar experience to mine.
I live in UK. 59 yes old and hobbies are fishing and restoring old radios.
Just had a 2nd fasciectomy in left dominant hand which involved skin grafts and is slowly getting better but leaving my middle finger numb and as they were to my palm they are more useable but still half bent.
Still have pinkie finger to do and like you dont want to go through this again but sure it will return.
Want to get back fishing and hoping the numbness eases so will have to be patient. Just glad to be getting some use back. My index finger and thumb are ok ish so these keep me able to do most tasks within reason.
Right hand has nodules but luckily no sign yet of contracture so I have been learning some tasks right handed.
Thank you for your post as it was so similar to me that I felt it was worth a response knowing that my scenario has been had by others
Horrible disease that is a lottery and somewhat life changing and not talked about enough.
Cheers
John
Hi, physio should help gain the best use of the hand whilst healing and recovering from the surgery. Also scar management and as you say patience. Discuss splinting with surgeon and physio. Some do, some don't. Best wishes SB

01.12.21 09:52
wach 

Administrator

01.12.21 09:52
wach 

Administrator

Re: Xiapex

if you are interested, you might listen to the last session ("Experimental Treatments") of the current virtual symposium on Dupuytren Disease. You first need to register for this session. You do that by clicking on the registration link on https://dupuytrensymposium.org/scientific-program/ . You need to answer a few questions (your responses will not be verified but you should at least input your correct email address). You will then get by email an invitation to join the session tonight. That invitation will include a link to join that session. Might be interesting presentations.

Wolfgang

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