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hmmm.. Xiapex or NA or maybe surgery or then again maybe NA??
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05/26/21 10:58
AvAlanche 
05/26/21 10:58
AvAlanche 
Re: hmmm.. Xiapex or NA or maybe surgery or then again maybe NA??

Thanks for your detailed reply @bstenman. I know I am still at an early stage as my fingers are straight at the moment, the only visible sign is the 2 nodules. I just want to get ahead of it before they get worse as they are interfering with my day to day activities.
Still have a bit of research to do and decide my next step, the collagenase injection seems like the best option, but at that price and it's availability on in the US, seems out of reach at the moment.

05/26/21 11:08
wach 

Administrator

05/26/21 11:08
wach 

Administrator

Re: hmmm.. Xiapex or NA or maybe surgery or then again maybe NA??

If you only have nodules and no contracture, Xiaflex would not be an option anyway. Xiaflex used to be injected if the extension deficit was already more than 20 degree. I would recommend considering radiotherapy. That's in your stage the best option.

We are listing a clinic in Galway https://www.dupuytren-online.info/radiotherapy_clinics.html but that would not be round the corner for you. Maybe there is a RT center closer to you.

Wolfgang

AvAlanche:
Thanks for your detailed reply @bstenman. I know I am still at an early stage as my fingers are straight at the moment, the only visible sign is the 2 nodules. I just want to get ahead of it before they get worse as they are interfering with my day to day activities.
Still have a bit of research to do and decide my next step, the collagenase injection seems like the best option, but at that price and it's availability on in the US, seems out of reach at the moment.


Edited 05/26/21 11:11

05/26/21 12:58
AvAlanche 
05/26/21 12:58
AvAlanche 
Re: hmmm.. Xiapex or NA or maybe surgery or then again maybe NA??

spanishbuddha:
bstenman:
Xiaflex is still available and has not been taken off the market.
Collagenase is no longer generally available in many countries, this includes Europe and some others. This was a cost and marketing decision. It remains in use in the USA as Xiaflex. I have heard some UK doctors continue to use it privately, sourced via private means. More here https://www.dupuytren-online.info/dupuyt...se_clinics.html

This thread has a useful report by someone who was treated in Paris https://www.dupuytren-online.info/Forum_...34176780.html#4


Thanks for your reply spanishbuddha, I will just have to keep an eye on how this is progressing and then consider my options

05/26/21 13:01
AvAlanche 
05/26/21 13:01
AvAlanche 
Re: hmmm.. Xiapex or NA or maybe surgery or then again maybe NA??

wach:
If you only have nodules and no contracture, Xiaflex would not be an option anyway. Xiaflex used to be injected if the extension deficit was already more than 20 degree. I would recommend considering radiotherapy. That's in your stage the best option.

We are listing a clinic in Galway https://www.dupuytren-online.info/radiotherapy_clinics.html but that would not be round the corner for you. Maybe there is a RT center closer to you.

Wolfgang
AvAlanche:
Thanks for your detailed reply @bstenman. I know I am still at an early stage as my fingers are straight at the moment, the only visible sign is the 2 nodules. I just want to get ahead of it before they get worse as they are interfering with my day to day activities.
Still have a bit of research to do and decide my next step, the collagenase injection seems like the best option, but at that price and it's availability on in the US, seems out of reach at the moment.



Thanks Wolfgang.

I am still at the early stages and learning as much as I can about this.
The consultant I went to never mentioned radiotherapy to me. Just a steroid injection, but I am not sure how much that will do.
I will look into radiotherapy also. Thanks again for your help.

Thanks again everyone. This thread has been so helpful!

05/26/21 20:10
bstenman 
05/26/21 20:10
bstenman 
Re: hmmm.. Xiapex or NA or maybe surgery or then again maybe NA??

In 2007 I flew to Essen Germany to see Professor Seegenschmiedt as there was no one performing XRT for Dupuytren's at that time in the United States. I stayed for 10 days to get my radiation treatments on both hands. If I needed to fly to Callfornia from Europe to spend two days and get the NA and Xiaflex injections from Dr. Denkler, I would not hesitate to do so.

In 2007 I could not put my hands in my jean pockets to get car keys or get my hands flat on a table without pushing down very hard with the other hand and even then they would not be completely flat. After the XRT and NA my Dupuytren's was still a problem that needed another NA every two years. After the NA and Xiaflex with Dr. Denkler in February of 2011 my hands have not required any further treatment of any kind so I am convinced that this is the best solution.

I paid $3500 out of pocket for the Xiaflex as it was not covered by my medical insurance and the USA is more primative when it comes to providing universal health care and the gorvernement allows rapacious billing for all aspects of medical care. The costs were what they were and I could afford to pay the costs. It came down to my own quality of life.

05/27/21 22:53
AvAlanche 
05/27/21 22:53
AvAlanche 
Re: hmmm.. Xiapex or NA or maybe surgery or then again maybe NA??

bstenman:
In 2007 I flew to Essen Germany to see Professor Seegenschmiedt as there was no one performing XRT for Dupuytren's at that time in the United States. I stayed for 10 days to get my radiation treatments on both hands. If I needed to fly to Callfornia from Europe to spend two days and get the NA and Xiaflex injections from Dr. Denkler, I would not hesitate to do so.

In 2007 I could not put my hands in my jean pockets to get car keys or get my hands flat on a table without pushing down very hard with the other hand and even then they would not be completely flat. After the XRT and NA my Dupuytren's was still a problem that needed another NA every two years. After the NA and Xiaflex with Dr. Denkler in February of 2011 my hands have not required any further treatment of any kind so I am convinced that this is the best solution.

I paid $3500 out of pocket for the Xiaflex as it was not covered by my medical insurance and the USA is more primative when it comes to providing universal health care and the gorvernement allows rapacious billing for all aspects of medical care. The costs were what they were and I could afford to pay the costs. It came down to my own quality of life.


I'm glad to hear that it improved for you considering how bad it was. I must still consider my options and hopefully arrive at a solution that works for me.

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