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Xiaflex follow up research
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03/18/2010 21:55
mike59 
03/18/2010 21:55
mike59 
Re: Xiaflex follow up research

How many times can one have RT?

03/19/2010 04:08
flojo 
03/19/2010 04:08
flojo 
Re: Xiaflex follow up research

It depends upon the dosage. My RT was a low dosage (1.7 times 5 days), so I can have it again on the same area. I think the total can go as high as 30-40Gy.
It only counts in the actual area radiated. Any area not in the RT target area is not affected by radiation.

03/19/2010 23:26
Superdadu 
03/19/2010 23:26
Superdadu 
Re: Xiaflex follow up research

I asked my husband's hand surgeon if he did Xiaflex injections. I have a slight progression of the slow type of Dupuytren's. He emphatically replied that he will not use Xiaflex under any circumstances regardless if the FDA has approved it. He went on to say that his hand surgeon's association would consider it malpractice because Xiaflex dissolves (or however it works) not only the affected tissue but also the nerves and whatever else it comes in contact with. Have any of you heard about this?

03/20/2010 02:11
flojo 
03/20/2010 02:11
flojo 
Re: Xiaflex follow up research

Wow! Hadn't heard that about Xiaflex.

Also noticed that in my last post, I made a mistake. I failed to say that I had RT for 5 days each week
for two weeks in a row.

03/20/2010 05:05
wach 

Administrator

03/20/2010 05:05
wach 

Administrator

Re: Xiaflex follow up research

Xiaflex has been approved by the FDA. Xiaflex is the brand name for collagenase, an enzyme that dissolves primarily collagen, i.e. the material that constitutes the Dupuytren cords. But collagen is also used in the healthy body, e.g. in joints, and collagenase might affect other tisseu as well. That why it is injected in very small quantities into the Dupuytren cord. By the way, cortizone also affects/destroys other tissue and has been injected into Leddehose and Dupuytren nodules for decades.

Wolfgang

Quote:



I asked my husband's hand surgeon if he did Xiaflex injections. I have a slight progression of the slow type of Dupuytren's. He emphatically replied that he will not use Xiaflex under any circumstances regardless if the FDA has approved it. He went on to say that his hand surgeon's association would consider it malpractice because Xiaflex dissolves (or however it works) not only the affected tissue but also the nerves and whatever else it comes in contact with. Have any of you heard about this?


03/20/2010 18:10
mike59 
03/20/2010 18:10
mike59 
Re: Xiaflex follow up research

I had not heard that about Xiaflex. That sure gives a reason to pause and research it.

03/21/2010 03:39
moondanc 
03/21/2010 03:39
moondanc 
Re: Xiaflex follow up research

As a participant in the FDA Xiaflex trials with a worsening condition afterwards and a "correction" that lasted less than a year, I'm definitely not a Xiaflex fan but there are some things I found in the trials worth noting. Over the 6-7 years prior to Xiaflex being approved, the dose of collagen in subsequent stages was reduced to 0.58 mg per injection. Xiaflex is injected directly into the cord with explicit instructions on hand movement and other activities after injection. Blood tests were required upon enrollment, prior to injection, after injection and at 3 month intervals for a year.Other reactions, illnesses and subsequent events were monitored fairly closely in questionnaires. Stanford, the test site where I had my injections, is doing a 3 year followup study. I'm going in Monday and will be monitored once a year for the next three years. Again, they want a report of all experiences, illnesses, reactions, etc. since 12/2007 and will also require another blood test primarily, I believe, to monitor blood antibodies. Finally, I don't believe there was a single reported case of it destroying other tissue in the trials. That said, however, it does have that potential and I think it's essential that if someone decides to do it, they make sure they have an extremely qualified hand surgeon and not just any doc. I find it really upsetting that apparently any MD can purchase and use it. I'm sure there will be some abuses and over-use/too many injections. As far as I know there aren't any guidelines as to how many cords can be injected. Personally, I think it has exacerbated and accelerated my disease but there's absoutely no way to prove that but I wouldn't go near it again without years of followup studies. I found some current info online and I'll post it with it's own title.
Diane


04/11/2010 21:00
winterwave

not registered

04/11/2010 21:00
winterwave

not registered

Re: Xiaflex follow up research

I have never did this before on the internet but have been told about this drug, and want to know if it really works? I have had dupuytrens since my early thirties had surgery on both hands when I was fifty two and they could not straignten out [said I waited too long] but better than they were.Will this still work ?

04/11/2010 21:28
LubaM. 
04/11/2010 21:28
LubaM. 
Re: Xiaflex follow up research


You have come to the right place to ask questions...many wonderful people on this forum who are caring and take time to answer questions... I know how great I felt when I was desperate for answers and discovered this forum back in 2006... it helped me cancelled a surgery and go for needle aponeurotomy instead.

Although I was not in the Xiaflex trials...from what I've read on this forum, we need a few years to see the long term results...Click on Search above, and find out more about Xiaflex on previous posts.

You don't mention which fingers you still have a problem with,or the degree of your contractures. Would you consider/are you a candidate for NA (needle aponeurotomy) ? Lots of information on the bar on left side of this page....

Post all your questions...you'll get lots of answers....

Edited 04/12/10 00:30

04/12/2010 03:38
flojo 
04/12/2010 03:38
flojo 
Re: Xiaflex follow up research

Winterwave, Glad you found this Forum. It was just what I needed when I was diagnosed with Dupuytren's.
I agree with Luba. Give us more information about your contracture and consider NA. It still may be effective even after surgery. One of the doctors who perform NA can and will give you more information about your particular situation. You can check in the left column of this page under Needle aponevrotomy (NA) for doctors. Hopefully one will be near you. If not, they will still give you information if you email them information about your hands and send pictures.

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