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Xiaflex Part 2
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11/10/2010 14:21
coachG 
11/10/2010 14:21
coachG 
Xiaflex Part 2

I haven't posted in quite a while--since I was a couple of weeks out from my first experience with Xiaflex. Quick recap...

DD in right hand. Surgery 8 or so years ago. 3 NA treatments since, with the last treatment not relieving the contracture--too much scar tissue. Xiaflex treatment straightened the finger!! Not 100%, but at least I can grip a football now. I did have some pretty significant tenderness at the MIP joint (which was below the nodule) for over a month. That pain is now gone.

DD beginning in left hand. Nodules on palm & contracture at PIP of the pinky. RT treatment (2 rounds of 5 days) for the palm as the nodules were fairly small. RT seems to have slowed the progress of the nodules, though I continue to have severely dry skin--not a big deal in the whole scheme of things.

Decided to deal with the pinky as it was getting worse rather quickly. Went to Dr. Hutson in Walla Walla, WA. He had a hard time injecting Xiaflex as the nodule was quite dense. The injection was VERY painful. Went back for release the next day. He had done a few releases since my last visit & had some tearing of the skin, so he was prepared for mine to do the same as a precaution. But, no tear just a great release! 5 days later the finger is still pretty swollen & bruised (there is a nasty pinpoint bruise from the Xiaflex injection). Still some pain in the joint from straightening, but not bad.

All in all I am very happy with my results from Xiaflex. I was very skeptical about Xiaflex at the beginning, but being relatively young (46 right now) I was willing to give it a shot. I'm almost certain I'll be back for more treatments over the coming years & decades.

11/10/2010 18:31
tam1 
11/10/2010 18:31
tam1 
Re: Xiaflex Part 2

Thanks so much for posting these detailed reports on your experiences with Xiaflex. I hope you continue to write back so we can follow your progress over the months to come. Your information will be helpful to many of us who will consider Xiaflex as a treatment option.

11/11/2010 00:05
flojo 
11/11/2010 00:05
flojo 
Re: Xiaflex Part 2

Ditto to what Tam1 says.

Thanks!

11/19/2010 20:16
coachG 
11/19/2010 20:16
coachG 
Re: Xiaflex Part 2--2 weeks later

2 full weeks since my Xiaflex release (see above for full details!). Still swollen, still a pinpoint bruise from Xiaflex injection. Finger is almost fully straight, but is still tight in MIP joint due to another nodule. I'm not sure, but I think I have another nodule/contracture near the same point as the previous PIP contracture--not sure if it is swollen or a nodule.

There is some pain, especially when the finger gets hit by a flying plastic hockey puck in my PE class!! Wearing the splint at night is still uncomfortable & I'm not getting good sleep, which isn't good.

Will keep posting on my progress. Thanks for reading.

Eric

11/19/2010 22:36
tam1 
11/19/2010 22:36
tam1 
Re: Xiaflex Part 2

Coach, we wish you the best with your healing process and thank you again for sharing the details on your experience with Xiaflex. It will be interesting to see how long it takes before all the discomfort is gone and you can also return to sleeping normally, without a splint.

11/20/2010 21:32
flojo 
11/20/2010 21:32
flojo 
Re: Xiaflex Part 2

Are the other nodules you are noticing new ones? If so, it sounds like your Dups is active.

11/21/2010 21:12
coachG 
11/21/2010 21:12
coachG 
Re: Xiaflex Part 2

To answer flojo:
No, the nodules I mentioned aren't new. I have 3 on my palm & one on the side of my pinky MIP joint. The 3 on the palm seem to have slowed or stoppe progressing--I'm hoping the RT worked it's magice there. The nodule on the side of my pinky I'm thinking is active. There seems to be a nodule growing between the MIP & PIP joints on the pinky, basically right beside the nodule that the Xiaflex took care of. However, that nodule may just be swelling or some scar tissue???

11/21/2010 22:38
flojo 
11/21/2010 22:38
flojo 
Re: Xiaflex Part 2

Hmmm. Sounds like mine. I had RT on my whole palm including all MIP joints in July '09. Progression stopped, nodules softened, some disappeared and some are still there but not changing.

Then in June '10, I noticed a nodule on the inside of my pinkie near the PIP joint and another on the webside of my thumb and they kept getting harder and tighter. They were outside the previous RT area, getting bigger and with a feeling of tightness. I had RT done again in Sept. '10 on those two spots only (little finger including MIP but not high enough to include the nail, even though it was on the inside of my finger) with electron RT at Scripps LaJolla/San Diego with Dr. T. The nodule on my pinkie has softened but not gone away. It seems less tight. Nodule on my thumb has softened and essentially disappeared. After the first RT, improvement continued for 3-4 months. This time improvement has continued form September, so I think it will improve for a while longer.

So far, yours sounds more like mine than anybody else who has described their's, whatever that means. Not much probably because each case is so different.l

Good luck!

Flora

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