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XiaFlex Success Case
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05/06/2013 02:47
bigm100d 
05/06/2013 02:47
bigm100d 
XiaFlex Success Case

Just wanted to pass my recent case to the team.

I'm 55, Irish/Scottish, 45deg contracture on right pinky (with a nodule above palm) that developed over 8-10yrs. Left hand shows signs but nothing near contracting or obvious.

Got XiaFlex on Monday, manipulation Wednesday, removable splint on Thursday, in SF bay area.

Swam Friday, went to gym Saturday, swam Sunday and doing self theropy all days at 2hr intervals.

My hand is now flat, cord gone, and I may post before/after pictures later. Nodule above palm remains, and is black/blue but getting better every day, in color, but doc says it will remain forever, which is OK w/me.

So the XiaFlex injection method has been very good to me. Lydacaine injection just before manipulation was awesome, only heard light popping sounds but very little physical pain, until that evening, throbbing pain lasts 12hrs even with pain pills. Since then, very low pain, but I need to keep it elevated. Today is Sunday, less than a week since beginning.

05/06/2013 11:35
hammer 
05/06/2013 11:35
hammer 
Re: XiaFlex Success Case

Its a great drug,so glad its out here for us.The down time is just a few days and then back to life as usual.Thats Awesome.Dave

05/06/2013 22:08
zinkadoodle 
05/06/2013 22:08
zinkadoodle 
Re: XiaFlex Success Case

It is a great drug. And, although my success wasn't as resounding as yours, in that I am 3 weeks out and still some pain and not fully straight, I'd take this over open surgery any day. I had open surgery 14 years ago on my left hand, and it took months to recover. The Xiaflex on my right hand takes a mere couple of weeks. Amazing. I'm happy for you.

05/07/2013 17:51
moondanc 
05/07/2013 17:51
moondanc 
Re: XiaFlex Success Case

If anyone on this forum has the same results a year after Xiaflex, I'd sure like to hear it. I could be wrong but I don't recall anyone posting the degree of contracture after 12-18 months.

Diane

Edited 05/07/13 20:52

05/08/2013 13:22
bigm100d 
05/08/2013 13:22
bigm100d 
Re: XiaFlex Success Case

Yes Diane, it will be good to hear some long term results. My doc says the contraction can come back.

Attached are 4 of my pictures thru the process, today is 1week from manip. day

Marty

Attachment
4pics.jpg 4pics.jpg (51x)

Mime-Type: image/jpeg, 220 kB

05/08/2013 15:09
PatJohnston6384 
05/08/2013 15:09
PatJohnston6384 
Re: XiaFlex Success Case

So happy to read your success story. And the pictures are really helpful in showing the results of an Xiaflex injection for your DD. Pat

05/09/2013 10:32
hammer 
05/09/2013 10:32
hammer 
Re: XiaFlex Success Case

Im coming up on 2 years with my right hand. Still nice and straight.Im still working on the left hand.It was a mess.Dave

05/09/2013 17:59
bigm100d 
05/09/2013 17:59
bigm100d 
Re: XiaFlex Success Case

Good news Dave,

Can you tell me how much contraction you had. You see from my pics mine was ~60deg

Marty

05/11/2013 02:26
pia2some 
05/11/2013 02:26
pia2some 
Re: XiaFlex Success Case

I had my first Xiaflex injection done in April, 2012. So it's been over a year. My ring finger on my right hand had a 40 degree contracture. The whole Xiaflex process was incredibly painful for me. My entire arm bruised up into my armpit. My hand was very sore for about 5 days and then it was okay. But the first two days were incredible as far as pain. Dr. Costas in Atlanta did my injection. He was part of the first trials that were done.

The day after injection.


Immediately after the manipulation. I took this in doctor's office. Still swollen and bruised on the back of my hand, but it is flat!


By Thanksgiving of 2012, the contracture in that finger had started again and the entire hand was worse. Not only that, but my left had took off and was rapidly developing nodules and cords and it was perfectly fine when my right hand was treated. Now my right hand is worse than ever. Notice the ring finger is contracted again (not as much). The pinky has been bad for a while. You can see the huge nodule on the PIP joint there. The palm is pitted and seems to be folding in on itself. I now have cords running everywhere. There is a new one from my index finger running across the webbing and into my thumb. There are also nodules on the PIP joint of every finger on my right hand. You can see them in this picture.


The index finger is pulling sideways and goes under the ring finger.


Left hand isn't contracting yet. But it is growing tighter by the day. This shows the pitting that runs across the palm in two horizontal lines and they are hard as rocks.


So Xiaflex did not work for me in the long run. And I feel quite certain that it somehow exacerbated the progression of the disease rapidly in both hands.

~ dawn

05/11/2013 13:15
cschieber 
05/11/2013 13:15
cschieber 
Re: XiaFlex Success Case

Hi Dawn. Thank you so much for posting your pictures and detailing your experience. I was really considering Xiaflex as my next move but I don't know now after seeing the horrific flare it caused for you. :((((

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