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Xiaflex Injections Is This Normal?
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10/05/2018 05:17
wach 

Administrator

10/05/2018 05:17
wach 

Administrator

Re: Xiaflex Injections Is This Normal?

Hi rockinroller,

as you are reacting very strongly on collagenase injections why not try needle fasciotomy (NA) next time? It's typically less painful and cheaper, results depend on the skill of the doctor (it pays to select a good one!) but ought to be generally comparable with those of collagenase injection.

Wolfgang

10/05/2018 06:50
Stefan_K. 
10/05/2018 06:50
Stefan_K. 

Re: Xiaflex Injections Is This Normal?

rockinroller:
I told myself that if this process corrected the contractures for at least a year, I'd go through it again (I am a pianist and cannot afford to have any bent fingers).

Hopefully, like others, with a splint glove worn at night you will be able to prevent renewed contracture or at least to delay it significantly. Good luck!

Stef

[56, Dupuytren diagnosis 2006, RH contracture and PNF/NA 2014, radiotherapy RH 2015, LH 2017 & 2018, night splint glove RH since 2015]

10/05/2018 14:20
GailSusan 
10/05/2018 14:20
GailSusan 
Re: Xiaflex Injections Is This Normal?

Ironically, my Dupuytren's Contracture progressed very rapidly after the Xiaflex injections in June to the point where I now have to have surgery on October 22nd. My hand is WORSE than before I had the Xiaflex injections. Four months of physical therapy, splinting, and pain for no result. Glad I have good health insurance or the cost would have been very high.

I had surgery on my right hand 20 years ago and it has been fully functional with no recurrence. I am hoping for the same with my left hand. If surgery is what it takes to get my hand back to normal, then that's what I will do. I don't have the time or patience to try other methods. I know surgery worked for me before, so I have to believe it will work again. I'll let you know how it goes.

10/05/2018 18:33
Cherrise 
10/05/2018 18:33
Cherrise 
Re: Xiaflex Injections Is This Normal?

I don't think anyone's reaction to many treatments for DC can be normal. Everyone is so different with many of the treatments for DC. The result in my experience was the opposite of what you had experienced with xiaflex and surgery.

First I had surgery ( the zig zag incision ), had a slight pinky curve initially and pain. After therapy for weeks then months later the surgery was unsuccessful. In fact the surgery actually caused the DC to become more active and in a few months I had three fingers affected instead of just the pinky. The fourth and fifth fingers in a few months after surgery curled up in a tight fist with the third finger not far behind. Leaving the right hand in pain and extreme limited use.

Next tried NA, no luck. Then the third treatment was the charm after Xiaflex injections.I had similar arm pain, swelling,brusing blistering,skin tears for a few weeks.In fact my pics are on this forum showing the fingers/arm after injection. See xiaflex pics. After two weeks the fingers were manipulated to straighten.Yes it seriously hurt thru manipulation.

That experience with DC treatments was 8 years ago. Now wear the Fixglove at night since have had no reoccurrence. However I have lost some fine motor skills in the fingers with slight disfigurement and can easily cope by adjusting expectations. Small note to self... Never shake hands always fist pump.

Wish you well on your next journey. Sending healing blessings your way.

10/05/2018 19:54
GailSusan 
10/05/2018 19:54
GailSusan 
Re: Xiaflex Injections Is This Normal?

Cherise, I wonder if trauma has something to do with the progression of Duyputren's. I fell the year before my progression increased and broke a finger on my left hand. For almost 20 years it had remained at the same level, but the fall seemed to be the beginning of a more rapid progression of Dupuytren's. Then when I had the Xiaflex, that was more trauma between the skin breakage, bleeding, and splints. Even with the splints, it progressed rapidly and I wonder if the the splints were part of the trauma.

I sure hope the surgery works this time, like it did last time! I guess all we can do is try each treatment and see what works. My right hand is almost perfect. I'm so glad the surgery worked 20 years ago! Hoping the left hand does as well. Glad your treatment worked for you! Thank you for sharing!

Edited 10/06/18 15:43

10/05/2018 22:22
rockinroller 
10/05/2018 22:22
rockinroller 
Re: Xiaflex Injections Is This Normal?

After both my April and August sessions with Xiaflex I wear a molded splint at night, hoping that the forced vertical positioning of my little and ring fingers will discourage contracture. Also, I've reviewed and interviewed no less than 6 ortho and hand surgeons over the past 4 years since I started noticing the beginning of DC and there seems to be a common thread of opinion by patients and docs: that surgery often exacerbates the condition, as though "waking a sleeping giant". I turned down surgery for the simple reason that the post-op therapy and healing period was so protracted. Financially it would have been much cheaper compared to Xiaflex however.

10/06/2018 06:09
allanbconway 
10/06/2018 06:09
allanbconway 
Re: Xiaflex Injections Is This Normal?

I have been advised by two different surgeons that I shouldn't wear a splint. Idea seems to be that is actually causes trauma and exacerbated the situation. Both suggest not wearing a glove at all. This seems odd since there seems to be a strong consensus on this site that they are beneficial.

10/06/2018 06:58
spanishbuddha 

Administrator

10/06/2018 06:58
spanishbuddha 

Administrator

Re: Xiaflex Injections Is This Normal?

allanbconway:
I have been advised by two different surgeons that I shouldn't wear a splint. Idea seems to be that is actually causes trauma and exacerbated the situation. Both suggest not wearing a glove at all. This seems odd since there seems to be a strong consensus on this site that they are beneficial.
There isn’t substantial evidence from control trials that they help either pre or post surgery. How would you conduct such a meaningful trial. But there are reports both ways including one at least that reversed contracture using a silicone patch. It was a topic at the last conference for opposing views. I think this thread might help https://www.dupuytren-online.info/Forum_..._1176_6.html#50. As you say many people post that they believe splinting post procedure has helped. So if you want an answer supported by trials evidence, there isn’t a compelling one, if you want an answer anecdotally it veers towards splinting at least by those who report it, that it helped. Wolfgang might weigh in here.

10/06/2018 07:49
Stefan_K. 
10/06/2018 07:49
Stefan_K. 

Re: Xiaflex Injections Is This Normal?

It is one thing to question the effectiveness of night splinting, another to claim it causes trauma and actually exacerbates the situation. I wonder what splints or splint gloves these surgeons have in mind, and if they are aware of any concrete cases in which this supposedly occurred. A good splint glove is not supposed to put pressure on the fingers, just to prevent them from curling and forming a fist at night. In my case the straightened pinky started to contract again six months after the PNF/NA procedure and I am convinced that without the night splint which I then started using I would not have been able to keep it almost straight until I could get radiotherapy in Germany. Since the glove doesn't bother me at all I am not ready to drop it and watch what happens and what trauma that could cause.

10/06/2018 09:01
wach 

Administrator

10/06/2018 09:01
wach 

Administrator

Re: Xiaflex Injections Is This Normal?

Whether splinting is beneficial or not is still controversial. A summary is on https://www.dupuytren-online.info/dupuyt...-splinting.html .

Wolfgang

allanbconway:
I have been advised by two different surgeons that I shouldn't wear a splint. Idea seems to be that is actually causes trauma and exacerbated the situation. Both suggest not wearing a glove at all. This seems odd since there seems to be a strong consensus on this site that they are beneficial.

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contracture   progression   surgery   beneficial   physical   occasionally-reported   exacerbated   fingers   treatment   splinting   treatments   therapy   Xiaflex   Medicare-insured   experience   manipulation   Injections   subdued--lasted   dupuytren-online   radiotherapy