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Getting Xiaflex - what should I expect?
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11/12/10 17:53
ellenpao 
11/12/10 17:53
ellenpao 
Getting Xiaflex - what should I expect?

I'll be getting the Xiaflex injection soon - what should I expect? Any info from someone who has had the procedure done is greatly appreciated!

11/12/10 20:31
spanishbuddha 

Administrator

11/12/10 20:31
spanishbuddha 

Administrator

Re: Getting Xiaflex - what should I expect?

Have you seen the YouTube videos of Xiaflex treatment, some posted by patients?

Not quite the same thing as personal feedback on the experience, but might help until you get some further responses.

Good luck and best wishes with your treatment.

11/24/10 10:54
Terry

not registered

11/24/10 10:54
Terry

not registered

Re: Getting Xiaflex - what should I expect?

Okay i tell you what happened with me and you can take it from there. i don't pull any punches and am going to tell you like it is.
I have had Dup since i was 15 my father is crippled with it ,after 2 z plastis on my right hand and another on my left i said to myself no more until i'm really bad . Well along came NA so i read all i could find and then decided to give it a try i used Dr Garry Pess and it was a good experiance since i was the first thumb he had done . but after about 18mnths it came back, and not being able to use your thumb properly sucks. My dup is in my whole off both hands and after the 2nd surgery on my right it started to grow in my thumb. So hear i was with 2 wrecked hands from surgery not saying they wern't better but the process was what sucked ie 2mnth off recovery and then the soreness for how ever much longer it just goes on. Plus the regrowth.
And along came Xiaflex ,i tried to get in on the trials but they were only taking fingers my real problemn was my thumb,so i waited.
On monday nov 22nd i was given my first xiaflex shot to my right thumb which had 2 cords , it wasn't to bad but just like i read i did get some arm pit swelling and as the day went on my hand swelled but nothing i couldn't deal with all i had to do was remember the surgery after affects. Tuesday i waited till the afternoon and drove to see my new hand specalist, i just new this was going to hurt and was hoping it wouldnt just hurt with no results.
Well i wasn't surprise it hurt i'm not sure if part is your brain telling you what is happening should hurt and part is pain or just it hurt, Icould fell the cords tearing away from the tendons and hear them thats why i wonder if its not a little brain play as well as pain, you know if sounds bad so its gotta hurt . Well we were one cord down and on my 2nd pain shot i was sweating like a pig but could already see i had tons more range off motion than a few seconds ago ,belevie me it felt like hrs but was just a 20second ordeal. So here we go with the next cord and i was off the chair stamping my foot sweating and thinking this really hurts or does it again the mental thing is play games and it was done. My hand was completelly flat it hasnt been flat for 15yrs iwas so amazed i didn't really know how to react and yes it hurt but when i put the pain from this into the pain off surgery and the long recovery it was a breeze. Now just my pinky to do on my left hand .

As a second generation sufferer off Dup This is our cure as far as i'm concerened .
Terry Strobel Ironworkers local 40 NYC
my doc was Doctor Belinger off NYC
PS this was yestarday and today im going to work but tomorrow have a good thanksgiving.

11/29/10 20:23
ellenpao 
11/29/10 20:23
ellenpao 
Re: Getting Xiaflex - what should I expect?

Thank you Terry! It really helped, and thanks for your honesty. I also watched the YouTube videos, so I think I know what I'm getting into.

I am also a second generationer, early onset, multiple NAs, etc.
I will be having the shots (if Horizon BCBSNJ decides to cover them) with Dr. Pess also. Let's hope this is the best treatment for those of us who have big reoccurances, and have to live with these growing cords for the rest of out lives.

11/29/10 22:20
tannergls

not registered

11/29/10 22:20
tannergls

not registered

Re: Getting Xiaflex - what should I expect?

Well its a week and all is good still tender but my thumb has full range off motion and the cords in a large part were i got the shot seem to have gone hopefully eaten by the coligena i still have a lump by my knuckle on my thumb but compared to the 3in cord i had down my thumb it's nothing and feels kinnda soft . As for the cord between my thumb and finger in the crook area it seems to be largely gone my hand is completley flat.
Had my first visit with the therapist and she had only seen it on a video at a confrence i just wish she could have seen it before the shots.
I am still amazed at the outcome i just keep looking in dissbeleft not expecting anything close to what i got .
Good luck with yours we pushed the fact that i had tried all the other options with the medical and didn't seem to have any problem get it through.

01/26/11 23:57
mjengland 
01/26/11 23:57
mjengland 
Re: Getting Xiaflex - what should I expect?

whats the liklihood of DD returning after Xiaflex? Is this a permanent cure?

01/27/11 03:05
jocond 
01/27/11 03:05
jocond 
Re: Getting Xiaflex - what should I expect?

mjengland:
whats the liklihood of DD returning after Xiaflex? Is this a permanent cure?
This IS NOT a cure. The Xiaflex does work. However, it can return. In my situation it did return in less than one year. I've also had NA on the same two fingers a year and half later and sure enough it starting to return only a year after that. I was a part of the clinical trials in the US, and with no doubt had the real thing for each finger. Again, there is no cure.

Joe

01/27/11 18:43
spanishbuddha 

Administrator

01/27/11 18:43
spanishbuddha 

Administrator

Re: Getting Xiaflex - what should I expect?

Since the disease is still active, I wonder if you can you have RT after the Xiaflex, or if the RT effective at that stage?

That also may not be a cure but there are promising reports of it halting or slowing the progress of the disease at the early stages, usually before contracture.

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