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Xiaflex Complaint
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02/06/12 16:48
sandrahelene 
Xiaflex Complaint

I had an injection of Xiaflex 6 months ago. About a month ago my finger started bending again. The cord grew about three time the size it was in diameter and juts out of my hand making driving difficult. I am so sorry I went through the procedure only to come out MUCH worse that it was. I would never had anything injected into my hand again.

02/06/12 17:05
clarissa45 
Re: Xiaflex Complaint

I am so sorry that you have had this awful result! Are you in a study? What is your history? any radiation?
I am new to this - diagnosed two weeks ago. Have had i year of progressives nodules now over past months cord an contracture in my thumb. you are right - it makes driving - pushing a grocery cart - anything difficult. and who said it is not painful!

I go next week for a hand surgeon consult. i hear he has been doing the collagenase. I am hesitant to get it because i have had a lymph node resection on that side. Now after your post I definitely will not get it.

What is your next course of action? Please keep us posted.
Marge

02/06/12 17:28
wach 

Administrator

Re: Xiaflex Complaint

Did you wear a night splint after the injection? And if so, for how long?

Wolfgang

sandrahelene:
I had an injection of Xiaflex 6 months ago. About a month ago my finger started bending again. The cord grew about three time the size it was in diameter and juts out of my hand making driving difficult. I am so sorry I went through the procedure only to come out MUCH worse that it was. I would never had anything injected into my hand again.

02/06/12 17:43
sandrahelene 
Re: Xiaflex Complaint

I did wear a splint. My finger was straight for a few months after the shot and then gradually got bent again. I just noticed the bulging cord a few weeks ago when it became very apparent and painful when I held the steering wheel. I know that many people have been helped with the injection, but just wanted to let you all know of my experience. I am considering the needle therapy, but am nervous about the pain. I don't know why they can't put you in a twilight sleep when they do it. It is getting exceedingly hard to wash my face - type with 8 fingers ( my other pinkie is bent) wash my hands and face (my pinkie always goes up my nose (LOL).

If any of you have had the needle therapy, please let me know - honestly - how painful it was. Thank you.
Sandi

02/06/12 18:06
wach 

Administrator

Re: Xiaflex Complaint

Just curious because I had the enzyme injected into my finger 2 months ago: for how long did you wear your splint? Did you still wear it when the contracture started to come back?

BTW, you will also have to wear a splint after NA and the disease will be coming back as well. I didn't have NA myself but everyone is saying that it is not painful. You do feel the initial injection but that's about it. It's only a tiny wound.

Wolfgang

02/06/12 18:15
LubaM. 
Re: Xiaflex Complaint

Sandi,
I am so sorry you had such a bad experience with Xiaflex. You asked for honesty, so here it goes...

I have had Needle Aponeurotomy (NA) twice for the same small finger on my right hand. My first NA in July 2006 for a 45-50% contraction at the PIP joint of the small finger. The finger was totally straight after the NA, but the contraction returned after about 4 months. In March 2010, I had the NA re-done with a different doctor. By then I had developed a boutonniere deformity at the DIP joint where the tip of the finger bends upwards...so the finger looks like the letter Z in reverse. Again the finger was straight after NA, but the contraction returned to the original position.

I had therapy with a hand therapist both times and I used a night splint after both NA's ... perhaps not long enough. As far as painful it is really not bad at all and the great thing about NA is that the recovery is quick and it is not invasive. Also from my own experience and others on this Forum, there are no side effects from NA. The only problem, for me, is the recurrence issue and that is so individual.

I too have considered to try Xiaflex in the future, but I am still waiting for more reports on long term results and I am a bit hesitant because of some of the bad side effects I have read here.

Good luck to you and keep us posted.

02/06/12 18:34
sandrahelene 
Re: Xiaflex Complaint

wach:
Did you wear a night splint after the injection? And if so, for how long?

Wolfgang
sandrahelene:
I had an injection of Xiaflex 6 months ago. About a month ago my finger started bending again. The cord grew about three time the size it was in diameter and juts out of my hand making driving difficult. I am so sorry I went through the procedure only to come out MUCH worse that it was. I would never had anything injected into my hand again.


sandrahelene I wore it for about a month, but I don's see how wearing the splint would have not made the cord enlarge so much and pull my finger back.

02/06/12 18:39
sandrahelene 
Re: Xiaflex Complaint

LubaM.:
Sandi,
I am so sorry you had such a bad experience with Xiaflex. You asked for honesty, so here it goes...

I have had Needle Aponeurotomy (NA) twice for the same small finger on my right hand. My first NA in July 2006 for a 45-50% contraction at the PIP joint of the small finger. The finger was totally straight after the NA, but the contraction returned after about 4 months. In March 2010, I had the NA re-done with a different doctor. By then I had developed a boutonniere deformity at the DIP joint where the tip of the finger bends upwards...so the finger looks like the letter Z in reverse. Again the finger was straight after NA, but the contraction returned to the original position.

I had therapy with a hand therapist both times and I used a night splint after both NA's ... perhaps not long enough. As far as painful it is really not bad at all and the great thing about NA is that the recovery is quick and it is not invasive. Also from my own experience and others on this Forum, there are no side effects from NA. The only problem, for me, is the recurrence issue and that is so individual.

I too have considered to try Xiaflex in the future, but I am still waiting for more reports on long term results and I am a bit hesitant because of some of the bad side effects I have read here.

Good luck to you and keep us posted.

sandrahelene I am so glad you told me about the recurrence after your NA. What's the point of all of these procedures if it only keeps going back. I wonder if anyone else had the same experience as you with the recurrence issue. Well, good luck to you to and let's do the best we can.

02/06/12 19:23
wach 

Administrator

Re: Xiaflex Complaint

hi Sandrahelene,

unfortunately there is no cure available for Dupuytren's. Any of the current therapies will only buy you time, the disease will come back sooner or later. We all hope later, of course! But the good news is that this disease is treatable and you can well live 30, 50 years with it, without major complications. You might occasionally need to have your hands treated but that's managable.

The best advice is: don't let Dupuytren's spoil your life! Besides that, familiarize yourself with the avialable treatment options and reading this web site is a good start. Start with the Disease menu in the top menu, then go to the Treatment section and the Personal Experience page.

Wolfgang

sandrahelene:
Luba
I am so glad you told me about the recurrence after your NA. What's the point of all of these procedures if it only keeps going back. I wonder if anyone else had the same experience as you with the recurrence issue. Well, good luck to you to and let's do the best we can.
[/quote:

02/06/12 19:56
sandrahelene 
Re: Xiaflex Complaint

sandrahelene Thank you for your kind words of encouragement. However, I can't see going through all of these procedures for a few months relief. Hopefully you and others have had better experiences than I have, but I have just about given up on treatments. I do live my life the best I can, I type (with 8 fingers - I used to type 90 words a minute) and I do creative projects - painting on my IPad, scrapbooking, cooking, etc. But, the discomfort is always with me. You all can well understand that. I wish you all well and peace in the world.

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