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Xiaflex information
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04/09/2010 23:04
flojo 
04/09/2010 23:04
flojo 
Re: Xiaflex information

Wolfgang, The incidence of male-female relative to age makes some sense. I hadn't realized it until you mentioned it, but it does seem like those getting it early are mostly men. My onset was age 69 which fits the "old ladies" category. I guess there is research out there about it, but it doesn't tell us much more at this point until we know what Dupuytren's is all about anyway.

04/14/2010 16:50
Lars

not registered

04/14/2010 16:50
Lars

not registered

Re: Xiaflex information

I called the clinic where I participated in the Xiaflex trials to see if they are up and running with injections, if it is covered by insurance, and the costs involved. They told me that they will be starting soon, the insurance companies in Minnesota currently won't cover it, and the cost will be $8,000 per treatment. They will be working with the insurance companies to try and get it approved. I'm guessing they won't be seeing many patients until that time.

04/14/2010 17:00
SandyB 
04/14/2010 17:00
SandyB 
Re: Xiaflex information

Did you have a successful experience in the trials? NA is a fraction of the cost and, in my opinion, is less invasive.

Insurance coverage is so frustrating on so many levels. Who do we lobby? Where would we start?

04/14/2010 19:09
LubaM. 
04/14/2010 19:09
LubaM. 
Re: Xiaflex information


I agree with Sandy...unless there are long term studies to the contrary..
why would anyone go for Xiaflex versus NA that is cheaper and less invasive?

I wonder if its covered by Medicare?

04/15/2010 19:20
Lars

not registered

04/15/2010 19:20
Lars

not registered

Re: Xiaflex information

Sandy,

My trial experience worked out fine. I had about a 25 degree contracture of my right hand middle finger. The cord is in my palm. The trail consisted of up to three injections. Unfortunately I received the placebo all three times. After the trial ended I was able to receive the Xiaflex. I received the injection into three parts of the cord (you will know immediately that you received the drug and not a placebo - redness, swelling, and in my case bruising up my arm to my arm pit). The next day the physician was able to tear the cord at one of the injection sites. Two tries (some pain & discomfort). It is an interesting experience in that you can hear the cord tear from across the room. It sounds something like the sound you would make cleaning out the seeds and strings from a pumkin. The finger staightened out completely (some tenderness for a couple of weeks) and is still straight almost two years later.

I have two other cords in my right palm leading to my ring finger and little finger, but at the time the contractures weren't enough to receive any more injections and manipulations. As they have slowly contracted in the last two years I am probably close which resulted in my calling the clinic to get the update. If insurance covered it I probably would have gone in for injections again. I have good insurance (no deductible or co-insurance, just an office visit co-pay).

I have read on this site that there is a physician at the Mayo Clinic in Rochester who does NA. I will check him out.

Lars

04/15/2010 19:29
jimh 
04/15/2010 19:29
jimh 
Re: Xiaflex information

Lars, I also live in Minnesota. Who is doing Xiaflex here?

The surgeon at Mayo who does NA is Dr. Marco Rizzo. He did NA on my thumb last June and had some success - the contracture was unusual and very difficult. I plan to have him work on my hands again at some point.

A price of $8000 for Xiaflex treatment is laughable and until Auxilium starts to get into reality, Xiaflex will go nowhere.



Edited 04/15/10 22:30

04/29/2010 18:05
moondanc 
04/29/2010 18:05
moondanc 
Re: Xiaflex information

jimh:
Lars, I also live in Minnesota. Who is doing Xiaflex here?

The surgeon at Mayo who does NA is Dr. Marco Rizzo. He did NA on my thumb last June and had some success - the contracture was unusual and very difficult. I plan to have him work on my hands again at some point.

A price of $8000 for Xiaflex treatment is laughable and until Auxilium starts to get into reality, Xiaflex will go nowhere.




It looks to me from the Auxilium website that everyone and their brother is doing Xiaflex. Go to the Xiaflex.com website and you can find all sorts of info on training, distribution and there's also a physician locator. You can just enter the state in which you are interested and an alphabetical list will come up.
http://www.xiaflex.com/physician_locator.jsp

There's also info on a "free" patient assistance program and lots of other "training" and other details.

According to a person at my research study site, "... Medicare is covering the drug at the usual 80% - there is some rigamarole for the first 6 months not having a set insurance price but this should be transparent to the end user. If the person has supplemental insurance of course most of the 20% should be covered..."


This is NOT an recommendation or endorsement of Xiaflex. Hell would have to freeze over before I'd ever try it again!


Diane

04/30/2010 16:37
jimh 
04/30/2010 16:37
jimh 
Re: Xiaflex information

moondanc:
Go to the Xiaflex.com website and you can find all sorts of info on training, distribution and there's also a physician locator. You can just enter the state in which you are interested and an alphabetical list will come up.
http://www.xiaflex.com/physician_locator.jsp

Interestingly, the MD who did NA on my hand - Dr. Marco Rizzo at Mayo - is on the Xiaflex list. I'll very likely be seeing him again in the future and will ask him if he's actually using Xiaflex and if so what the results are. When I last saw him, I got the impression that he strongly favored NA over Xiaflex.

04/30/2010 19:30
moondanc 
04/30/2010 19:30
moondanc 
Re: Xiaflex information

jimh:

Interestingly, the MD who did NA on my hand - Dr. Marco Rizzo at Mayo - is on the Xiaflex list. I'll very likely be seeing him again in the future and will ask him if he's actually using Xiaflex and if so what the results are. When I last saw him, I got the impression that he strongly favored NA over Xiaflex.

Dr. Eaton is on the Xiaflex list as is Dr. Denkler and he has pictures on his website from an actual treatment.
http://www.plasticsurgerysf.com/scrapbook/
I think even though docs might favor NA, they may be using Xiaflex as another tool in their arsenal against this disease. Let us know what you find out from yours.

04/30/2010 21:09
jimh 
04/30/2010 21:09
jimh 
Re: Xiaflex information

Thinking back on when I saw Dr. Rizzo, I actually don't remember what he said about Xiaflex, and I may have misrepresented his views. So ignore my previous post. When I next see him I'll ask his opinion.

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