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Best options on PIP joints
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08/14/2013 20:14
moondanc 
08/14/2013 20:14
moondanc 
Re: Best options on PIP joints

pia2some:

You sound like me! I have nodules on every PIP joint in my right hand. The pinky is the worst because it is huge and has the 45 degree contracture. Cords up the side of my middle finger. The webbing between thumb and index finger is thickening by the day with a cord. Nodules all throughout my palm and cords going down and across. I had Xiaflex on the ring finger and it's contracting again.

My left hand is a mess too. Nodules in the palm and on ring finger but none of the other fingers. My palm is so puckered that my whole hand looks deformed.

I'll be very interested to know how all of your NA work turns out. That is a lot at once. I wish you the best with it.

~ dawn

I try not to rant about this but was your disease this aggressive before Xiaflex? Mine was't. Before Xiaflex--FDA trials, Dec 2007--I only had disease in one finger, ring finger, MCP joint, right hand and it had taken nearly 25 years to progress to a contracture.

Now, after Xiaflex, all 10 digits and more than half of my PIP joints. I know too many folks to whom this has happened, including folks in the trial, to think it is a coincidence!
*&%$#@ Xiaflex!

Diane

08/14/2013 20:22
pia2some 
08/14/2013 20:22
pia2some 
Re: Best options on PIP joints

NO! It was not. I had Xiaflex in the spring of 2012. At that time, my ring finger on the right hand was contracted at 40 degrees. My right pinky was bad then because the doctor wanted to inject that one as well. But I knew from reading the board that the pinky PIP was difficult to treat and I wasn't ready to mess with it. So it was basically the pinky and ring finger. My left hand was completely fine. Within four months of the Xiaflex, my left hand had quickly become affected and nodules were exploding all over my right hand.

I had reservations about using Xiaflex even then, but had found no one that did NA locally. NA was my first choice. I'm just not comfortable injecting something that powerful into my body when it is so new. No one knows what the long term effects are. But I went ahead and tried it.

Now both hands are a mess. Is it a result of Xiaflex or a result of the trauma in general? I don't know. I do know I won't use Xiaflex again.

~ dawn

Edited 08/15/13 00:03

08/14/2013 21:00
callie 
08/14/2013 21:00
callie 
Re: Best options on PIP joints

I think the information both of you present is very significant. You know that the Xiaflex people don't want to hear it so that type of information will be hidden from the public. It would be nice to know if others have had a similar experience.

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