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05/11/2015 14:16
MelioraDockery 
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05/11/2015 14:16
MelioraDockery
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Nervous re Xiaflex Injection
Very nervous. Going for my Xiaflex injection tomorrow morning and I've read such dreadful things about the possible results. Does anyone out there have a success story? I could really use some morale boostering right now.
Doctor advises the injection because the problem is at the knuckle meaning it could curve (eventually) into the palm and Xiaflex is the least invasive procedure. He is well practiced in giving Xiaflex. But the finger is currently at a 45 degree angle and doesn't really bother me that much so I'm not even convinced that I should be doing anything at the moment. Need some positive energy.
Thanks in advance, provided there is anyone out there who is glad they did it!
Mel
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05/11/2015 14:56
econn 
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05/11/2015 14:56
econn
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Re: Nervous re Xiaflex Injection
I had a Xiaflex procedure done on my left hand in July 2014 and am very pleased with the results. I kept postponing surgery and glad I did. There are no guarantees with ANY of the DC remedial procedures though. Every case is different and every practitioner has a different experience/success level. I will have this procedure done on my right hand if the growing nodules develop into cords. So far there is no sign of cords returning on my left hand but with DD there are no promises. I'll do it again if needed.
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05/11/2015 14:57
wach  Administrator
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05/11/2015 14:57
wach Administrator
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Re: Nervous re Xiaflex Injection
No need to panic after dreadful stories! Many, many thousands of collagenase injections worked our really well and those who had successful treatments usually go home happily and don't bother about posting anything. People who have trouble get concerned and start posting. Therefore comments in this forum always tend to be a little pessimistic. That doesn't mean that the posts are wrong, they are just drawing a pessimistic picture. Most likely you will have some swelling of the hand and some bruising but this will be gone typically after 2 weeks. And your finger will be much better!
Wishing you all the best
Wolfgang
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05/12/2015 00:00
Cherise 
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05/12/2015 00:00
Cherise
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Re: Nervous re Xiaflex Injection
MelioraDockery:
Very nervous. Going for my Xiaflex injection tomorrow morning and I've read such dreadful things about the possible results. Does anyone out there have a success story? I could really use some morale boostering right now.
Doctor advises the injection because the problem is at the knuckle meaning it could curve (eventually) into the palm and Xiaflex is the least invasive procedure. He is well practiced in giving Xiaflex. But the finger is currently at a 45 degree angle and doesn't really bother me that much so I'm not even convinced that I should be doing anything at the moment. Need some positive energy.
Thanks in advance, provided there is anyone out there who is glad they did it!
Mel
Hi Mel,
I have had the Xiaflex injections last Feb. 2015. I had a lot of confidence in this doctor, he was involved in the clinical study in this drug before it was approved by the FDA. It is basically an enzyme that will deteriate the collagen on the cords building up causing the contractions.
The result from Xiaflex also made the nodes in my palm larger and sore the doctor injected cortisone in the nodes which helped with the pain. The injection also reversed the finger contraction as well as removed the huge amount of scar tissue from surgery. Scar tissue is collagen . Xiaflex is also in another clinical study to remove scar tissue from burn victims. The flip side the treatment made the nodes and cords in my palm larger. And every treatment has lead to a flare which has always been my experience.
Now it's time to rest the hand,exercise it & I wear the spring splint during the day and hand splint at night. Now my dr wants to take the wait and see approach. Give the hand time. If it goes into remission then that's a positive as in my situation. Every approach to fix my finger seemed to make the disease flare worse. In my case I am very relieved to have the pinky finger open again thru Xiaflex and I am also in level 4 in this disease. The knuckle is slowly getting better as the finger was closed at 180' for 2 years. I takes time to see improvement.
Once the first surgeon 2 years ago saw the flare in my other four fingers from surgery on one pinky, he said he did all he could and sometimes that happens in Dupuytrens . I was basically left on my own untill I read about Xiaflex and found an experienced plastic surgeon in Xiaflex and dupretrens. Please remember everyone is different wih this disease, reactions to treatments are different for everyone.
Sending healing blessings your way!
Cherise
Edited 05/12/15 08:19
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05/12/2015 13:44
MelioraDockery
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05/12/2015 13:44
MelioraDockery
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Re: Nervous re Xiaflex Injection
Thank you all so much. You are the best and you really helped me go through with this.
I just got back from the actual injection which was a non-event, but my doctor advises that that's the easy part. I am now waiting for the pain and the swelling which he says is normal and will happen. And then Thursday I go for the straightening which he also says is unpleasant. I really like a doctor who tells it like it is because then I know that what I'm going through is not unusual.
But it's people like you who are the real comfort - The ones who have been through it and experienced it. I can't thank you enough...and don't desert me now!
With gratitude
Mel
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05/12/2015 15:27
econn
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05/12/2015 15:27
econn
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Re: Nervous re Xiaflex Injection
The worst part of the 2nd visit was the snapping sound when the cord snapped. I wasn't expecting a noise like that coming from my hand!!  The block injection is a little unpleasant, feels like a small electrical shock but it's only momentary. You will be amazed at the results, at least I was. My hand was sore for about a week, mostly because I could now bend my fingers all the way back about 20 degrees and tendons/muscles hadn't been in that position for many years. Wear a splint faithfully if your doc advises it.
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05/12/2015 23:21
Cherise
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05/12/2015 23:21
Cherise
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Re: Nervous re Xiaflex Injection
MelioraDockery:
Thank you all so much. You are the best and you really helped me go through with this.
I just got back from the actual injection which was a non-event, but my doctor advises that that's the easy part. I am now waiting for the pain and the swelling which he says is normal and will happen. And then Thursday I go for the straightening which he also says is unpleasant. I really like a doctor who tells it like it is because then I know that what I'm going through is not unusual.
But it's people like you who are the real comfort - The ones who have been through it and experienced it. I can't thank you enough...and don't desert me now!
With gratitude
Mel
Hi Mel,
Sounds like you have a great attitude and a doctor who is very up front with this treatment. You made it thru the first phase of Xiaflex and I hope this experience will have a positive out come.
You are brave to make this decision as things that happen to us are sometimes not easy as we tackle DC. the best we can.
The best part is that you have faith and confidence in your doctor. I find that to be a very important factor with this disease.
I won't desert you and will be with you all the way. When the day comes to open the finger it also takes a spray of cold on the finger and it goes very fast when the finger is manuiplated open. It's over before you can count to 3. I heard nothing as reported by others. I can't believe how fast it's over and then the healing begins.
Keep me posted.
I'm hoping you will not need any further treatment and go into remission.
Kind Regards.
Cherise
Edited 05/13/15 02:25
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05/14/2015 14:04
MelioraDockery
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05/14/2015 14:04
MelioraDockery
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Re: Nervous re Xiaflex Injection
Cherise and all,
Well the second phase is over! Had the finger straightened this morning. The dr. numbed it first (unpleasant but bearable) and lickity split it was straight, no apparent nerve or tendon damage! Now very swollen (I have ice on it) but little pain.
The dr. is marvelous and has been involved with Xiaflex since he was a resident in 1995 when the first clinical studies began. I can't possibly give him enough praise. he is warm, friendly, efficient and experienced - boy did I luck out!
He advises that it will come back but nobody can tell how quickly. Also that I should get the left pinkie done when it reaches about 20 degrees which is the prime angle in his opinion.
Thanks again for all your advice and support. I'll continue to stay in touch if all right with you all. Once the swelling goes down I'll be fitted with a splint and hopefully well on the way to recovery.
Mel
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05/14/2015 14:31
econn
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05/14/2015 14:31
econn
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Re: Nervous re Xiaflex Injection
Glad it all went well! The only side effect I have noticed is a nodule on my middle finger that wasn't there when the procedure was done in July '14. Not a big deal considering that I now have my hand back. There are remnants of cords in my fingers that may possibly try to regrow but I'll deal with that if/when they become a problem.
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