My xiaflex experience |
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12/04/2010 21:45
GMichaelnot registered
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12/04/2010 21:45
GMichaelnot registered
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Re: My xiaflex experience
Just thought I'd check in and give a progress report, as requested. I had my Xiaflex treatment three months ago (back in September; you can read about it earlier in this thread). I have had no problem at all, and can now fully straighten my lefthand ring finger. Without stretching (or without putting on the hand splint for a while), the finger does have a very, very tiny contracture, but nothing significant.
One thing that's worth mentioning: Once the swelling in the finger went down (which actually took a good two weeks or more) a second cord was revealed in the same finger. I think it's been there all along, but the big nodule in the first cord, and the significant contracture it caused, essentially hid the second cord from view. This cord is way off on the very side of the finger, which is quite atypical, and which may prevent it from ever causing a significant contracture (since fingers don't bend sideways!). In any case, the cord is only really tight when the finger is totally extended, so I'm hoping it won't be a problem in the future. It's three months now, and it hasn't seemed to contract at all, so I'm hopeful. Given the atypical location of the cord, I'm not sure what my options would be if it started to cause a problem. The hand surgeon said that even the location of my original cord (which was off to the side of the finger but not directly on the side, as this one is) made NA inadvisable and Xiaflex a little iffy.
Anyway, aside from this complication (which presumably had nothing to do with Xiaflex), everything else is fine. I don't even think about my finger anymore. It seems to operate just as well as it did before the contracture set in.
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12/04/2010 22:10
GMichaelnot registered
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12/04/2010 22:10
GMichaelnot registered
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Re: My xiaflex experience
P.S. Forgot to mention how my insurance has worked out. I have Blue Cross Blue Shield FirstCare, and I ended up having to pay a relatively small uncovered amount for the administration of the shot, the day-after manipulation, and the creation of the hand splint. But, so far, at least, the cost of the Xiaflex is apparently 100% covered. I'm not celebrating quite yet, since it's not unheard-of for people to get a big bill from BC/BS months and months after treatment, but I'm hoping...
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12/04/2010 22:12
spanishbuddha Administrator
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12/04/2010 22:12
spanishbuddha Administrator
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Re: My xiaflex experience
@GMichael: Just thought I'd check in and give a progress report, as requested. I had my Xiaflex treatment three months ago (back in September; you can read about it earlier in this thread). I have had no problem at all, and can now fully straighten my lefthand ring finger. Without stretching (or without putting on the hand splint for a while), the finger does have a very, very tiny contracture, but nothing significant.
One thing that's worth mentioning: Once the swelling in the finger went down (which actually took a good two weeks or more) a second cord was revealed in the same finger. I think it's been there all along, but the big nodule in the first cord, and the significant contracture it caused, essentially hid the second cord from view. This cord is way off on the very side of the finger, which is quite atypical, and which may prevent it from ever causing a significant contracture (since fingers don't bend sideways!). In any case, the cord is only really tight when the finger is totally extended, so I'm hoping it won't be a problem in the future. It's three months now, and it hasn't seemed to contract at all, so I'm hopeful. Given the atypical location of the cord, I'm not sure what my options would be if it started to cause a problem. The hand surgeon said that even the location of my original cord (which was off to the side of the finger but not directly on the side, as this one is) made NA inadvisable and Xiaflex a little iffy.
Anyway, aside from this complication (which presumably had nothing to do with Xiaflex), everything else is fine. I don't even think about my finger anymore. It seems to operate just as well as it did before the contracture set in.
Good story thanks for sharing.
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05/05/2011 17:17
DCinNYC
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05/05/2011 17:17
DCinNYC
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Re: My xiaflex experience
It has been 6 months since my injection - finger has full and normal flexion and there are no side effects. I had help underwriting the insurance co-pay from Healthwell Foundation (http://www.healthwellfoundation.org/). I think Xiaflex is the answer to this insidious condition and recommend it highly.
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05/06/2011 14:15
LubaM.
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05/06/2011 14:15
LubaM.
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Re: My xiaflex experience
DCinNYC: It has been 6 months since my injection - finger has full and normal flexion and there are no side effects. I had help underwriting the insurance co-pay from Healthwell Foundation (http://www.healthwellfoundation.org/). I think Xiaflex is the answer to this insidious condition and recommend it highly.
That sounds like great results, so far. Now what remains to be seen is how long it will last... I wish you good luck. Please keep posting on this forum. Also, could you please tell us which finger was involved, which joint and what was the extent of your contracture.
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05/10/2011 20:30
DCinNYC
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05/10/2011 20:30
DCinNYC
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Re: My xiaflex experience
At the time of the injection, my left hand digit #5 (pinky) had a moderate (25°-30°) contraction which had been reduced from a 60° contraction with physical therapy over a 5 month period prior to the injection.
Edited 05/10/11 23:32
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05/10/2011 21:35
LubaM.
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05/10/2011 21:35
LubaM.
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Re: My xiaflex experience
DCinNYC: At the time of the injection, my left hand digit #5 (pinky) had a moderate (25°-30°) contraction which had been reduced from a 60° contraction with physical therapy over a 5 month period prior to the injection.
That is very interesting...no one before has mentioned improvement of contraction with physical therapy. If it went from 60 degrees to 25-30 degrees in five months, I would be interested to find more details about what exact therapy you underwent... Did you go to a Hand Therapist? what treatments did they do?
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04/03/2012 03:37
bailey1
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04/03/2012 03:37
bailey1
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Re: My xiaflex experience
Had my first injection and manipulation 3 weeks ago and my experience has been somewhat different than what I've read on this forum. Not in a bad way just different. In 2 days I go and get another injection to straighten ring finger. I 1st noticed nodules in my palm 12 years ago. Before NA treatment and now with xiaflex, my pinky was bent so bad the tip was almost touching the palm. I had my 1st NA treatment 6 years ago. It came back with 18 months. 3 years later, went for 2nd NA treatment and it came back in about 14 months. So now I'm trying xiaflex. The big problem finger has been my pinky and problems with my ring finger began about 1 1/2 years ago. My pinky was by far the worst. Unfortunetly, 4 months ago I noticed a nodule in my right palm. Doc says although it may never be a problem and need treatment, it is defintely early dup. I'd be more than happy to answer any questions about my experience so far with xiaflex and my past experience with NA treatment. I know I had tons of question before my xiaflex. I've also asked my doctor many questions as well. He is and orthapedic surgeon specializing in the hand and wrist. He also was one of the doctors used when xiaflex was in its trial period. I will be blunt and not candy coat my experience. Any questions, just let me know..
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04/03/2012 21:34
callie
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04/03/2012 21:34
callie
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Re: My xiaflex experience
bailey1,
What has been the advice given to you about surgery? I only ask because I lean toward surgery in situations like yours. My finger was very similar to what you have experienced. I had surgery about 10 1/2 years ago and you couldn't tell that I ever had Dupuytren's in that hand except for a very faint scar. I have zero contracture and full use of my hand and finger.
Edited 04/04/12 00:38
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04/03/2012 23:27
hammer
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04/03/2012 23:27
hammer
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Re: My xiaflex experience
Hey Bailey,Ive had 4 xiaflex injections in my right hand starting in November and the last one was March 10th did you have much itching and how much does your finger contract when you havnt been splinting during the day?I would like people to know that its not a pain free treatment.Im also curious on the recurrance even though the numbers are looking good after the 6 year study.Good luck on that next injection.Dave
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