| Off to Xiaflex...again |
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07/22/2011 20:11
Valerie 
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07/22/2011 20:11
Valerie
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Re: Off to Xiaflex...again
His exact words are he has not seen a patient at this point that would benefit Xiaflex over N.A. As you know most of our patients have more than one finger involved and Xiaflex would take more visits ( since you can only give small doses) and more dollars.
And still unsure about complication rates. Here is link to the latest news we found on that:
http://www.orthosupersite.com/view.aspx?rid=84319
Hope you're doing well.
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07/23/2011 17:08
moondanc 
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07/23/2011 17:08
moondanc
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Re: Off to Xiaflex...again
Valerie:
His exact words are he has not seen a patient at this point that would benefit Xiaflex over N.A. As you know most of our patients have more than one finger involved and Xiaflex would take more visits ( since you can only give small doses) and more dollars.
And still unsure about complication rates. Here is link to the latest news we found on that:
http://www.orthosupersite.com/view.aspx?rid=84319
Hope you're doing well.
Hi Valerie,
I'm so so sorry to have not correctly quoted what I was told when I called Dr. Eaton's office. I reread my post and perhaps it could be interpreted as though I were criticizing Dr. Eaton which I was NOT. I'm a Dr. Eaton fan for life and would not even consider another doc especially because of his pioneering NA efforts and his cautious approach. I'm not a Xiaflex fan and despite my awkward wording I was wondering what the concerns are that he has especially about side effects, complications and other problems--from my own case I know about the side effects. I'm so sorry for any misunderstanding I may have caused. Thanks for posting the link!
I know how very thorough Dr. Eaton is with regard to research, education and staying absolutely on top of things and so I knew there must be good reasons at this point for his approach to Xiaflex. I need to come back soon to see Dr. Eaton and as soon as the FL summer heat subsides, I'm on my way. Thanks for your good wishes; I hope you both are doing well.
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07/23/2011 20:14
Valerie
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07/23/2011 20:14
Valerie
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Re: Off to Xiaflex...again
Oh no way was it insulting. I'm glad you posted it. Many people have called the office to ask if he has given it... He just wanted his folks to now that he will give it if they really want it and they know the risk. We're heard some people did very well. However, the most recent article I gave the link to stated a 10% serve complication occurrence, not the 1% that has been published. CE is in the process of trying to reach the guy who published it. Very interesting.
Now you know Charlie well enough to know that he is picky, picky, picky. And that's what you want in a surgeon. (maybe not so in a husband, lol). He checks and double checks on everything he is interested in before jumping in.
Right now we are the cool spot in the U.S. Only 100. So come on down. By August we'll be the hottest.
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07/23/2011 20:33
moondanc
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07/23/2011 20:33
moondanc
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Re: Off to Xiaflex...again
Valerie:
However, the most recent article I gave the link to stated a 10% serve complication occurrence, not the 1% that has been published. CE is in the process of trying to reach the guy who published it. Very interesting.
The other thing I know from being in the FDA trial studies and having a chance to talk to other patients is that several of them had the same experience I had--in fact a couple of them even worse-- their contractions got worse within one year of the study (the Stage 3 trials are doing either a 3 yr or 4 yr followup that I'm in). And they had difficulty getting their side effects reported (they were minimized by the study docs), their pain wasn't reported (we were told the study did not even use the "P" word), even the degree of contraction sometimes wasn't reported accurately. Also, for the half dozen patients I spoke with--and OT/PT staff--Xiaflex was much less effective on the PIP joint.
Valerie:
Now you know Charlie well enough to know that he is picky, picky, picky. And that's what you want in a surgeon. (maybe not so in a husband, lol).
I agree on both points, :-)
Valerie:
He checks and double checks on everything he is interested in before jumping in.
Right now we are the cool spot in the U.S. Only 100. So come on down. By August we'll be the hottest.
I hope my pinkie can hold out until October, otherwise probably September. Maybe I have a better chance now with NA since I have both PIP and MCP joints involved not to mention most of my fingers. Thanks for your response and I look forward to more information and independent Xiaflex study results, especially in patients who are 12 to 18 to 24 months post injection.
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