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Xiaflex? One doctor said yes, another said no
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07/25/19 23:38
Adriennels 
07/25/19 23:38
Adriennels 
Xiaflex? One doctor said yes, another said no

I have bilateral Dupuytren's and have not had anything done to either hand. I had nodules come and go in my palm for many years, but don't really have any big cords or nodules in my palms now. My pinky finger on my left hand started contracting 3 years ago. It is still not very bad (I can push it flat), but the right hand has flared up in the last 1.5 years and two fingers are involved (pinky and middle), but not too contracted - just past the point of being able to push two of them flat.

One doctor has recommended Xiaflex for the two fingers in my left hand, but another doctor didn't. For the doctor who suggested Xiaflex, I was not expecting the recommendation at my checkup, so I wasn't prepared to ask the right questions. I talked to the nurse later and asked why the doctor recommended this (as he does surgery as well) and her answer was simply that he always suggests what is best for the patient. Not that helpful.

I went to get a second opinion and the second doctor (Stanford) said:
- doesn’t recommend Xiaflex injection at this time
- he prefers or uses equally surgery
- my disease is more nodular than corded and he says that nodular disease doesn’t respond to Xiaflex as well
- he pointed out the nodule on the base of my left middle finger on my right hand and said that in particular was not a good place to do an injection
- doesn’t think my case is advanced enough to warrant the risks, so he would hold off
- there is a study that just came out of Japan or work in Japan that points to Xiaflex being successful on nodular disease, but he that's very new
- he doesn’t think the other doctor is wrong in attacking the disease early, but his approach is different

Both doctors seem very experienced. My ortho (I also have frozen shoulder) suggested I just go it, as there is nothing to lose, but the more I read about Xiaflex, the more I see that it is painful, has a recovery period and doesn't have a very good non-recurrence rate.

Any thoughts?

Thanks,
Adrienne Smith
Portola Valley, CA

07/26/19 09:26
spanishbuddha 

Administrator

07/26/19 09:26
spanishbuddha 

Administrator

Re: Xiaflex? One doctor said yes, another said no

Hi Adrienne. Xiaflex and NA is most helpful for straightening a contracture when there is a clear palpable cord that can be easily accessed with a needle for either the injection or NA. A cord in the pinkie, rather than the palm, is usually the most difficult to treat using either technique. Xiaflex, as you will have read, has more side effects, more down time and recovery, requires a little less skill or experience and can be used where NA is more problematic. Recurrence may occur after both. Are you close to DR Denkler in Larkspur, who has good recommendations or feedback on the forum, but I don’t know which treatments he practices. He might give a second opinion. Best wishes SB

07/26/19 22:07
BRIANB 
07/26/19 22:07
BRIANB 
Re: Xiaflex? One doctor said yes, another said no

This may sound CRAZY ... has Botox ever been tried on this rotten disease?
It seems everyday I hear or read where Botox is used for a new and different purpose ..

07/27/19 10:00
spanishbuddha 

Administrator

07/27/19 10:00
spanishbuddha 

Administrator

Re: Xiaflex? One doctor said yes, another said no

BRIANB:
This may sound CRAZY ... has Botox ever been tried on this rotten disease?
It seems everyday I hear or read where Botox is used for a new and different purpose ..
See here https://dupuytrens.org/botox-and-dupuytren-disease/

07/28/19 22:51
Adriennels 
07/28/19 22:51
Adriennels 
Re: Xiaflex? One doctor said yes, another said no

spanishbuddha:
Hi Adrienne. Xiaflex and NA is most helpful for straightening a contracture when there is a clear palpable cord that can be easily accessed with a needle for either the injection or NA. A cord in the pinkie, rather than the palm, is usually the most difficult to treat using either technique. Xiaflex, as you will have read, has more side effects, more down time and recovery, requires a little less skill or experience and can be used where NA is more problematic. Recurrence may occur after both. Are you close to DR Denkler in Larkspur, who has good recommendations or feedback on the forum, but I don’t know which treatments he practices. He might give a second opinion. Best wishes SB

Thank you - that's very helpful to know. I am about an hour and 15 mins from Larkspur, so I made an appointment with Dr. Denkler for next month. I will see what he says and followup with a post.

Thanks,
Adrienne

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