| Confession of an NA Zealot |
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01/25/2013 06:10
wach  Administrator
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01/25/2013 06:10
wach Administrator
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Re: Confession of an NA Zealot
Something I could imagine (not more!) is that if Xiaflex is not fully injected into the cord and leaks out it might in part go into the blood, damage collagen in neighboring joints and cause, on a long term, earlier onset of arthritis. This would probably take 10 years or more to show and would be very difficult to detect because you wouldn't know what the development would have been without the injection. But that's pure speculation and time will tell.
Wolfgang
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01/25/2013 06:13
Randy_H 
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01/25/2013 06:13
Randy_H
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Re: Confession of an NA Zealot
Reading this thread just cracks me up. You guys think I'm Michael Corleone or something?
"Just when I thought I was out they draw me back in?"
Hey, all this talk about this substance loose in the body, like “Invasions of The Body Snatches”? I mean really. You think the American FDA, who approved Xiaflex, would actually put us at risk just because of the millions of dollars invested and now to be made by BioSpecifics and Auxilium and Big Pharma in general?
No way..............right?
This now becomes one of those organic - non-organic debates about which we have no data. "Oh but Randy--the reason we have no scientific data about GMS raised corn is because there is no money to do it justice." You might be Right. Maybe.
Sorry, this sounds just like all that garbage regarding the dangers of nerve damage from NA as opposed to the well known (and personally experienced) risk of such from Open Surgery (may it rest in Perpetual Uneasy Peace)
Ok, so yes. 20 years have not passed since the FDA approval of Xiaflex. What? So now we have 15 years or so left until this argument is silenced? I can't wait. Let's debate that until them shall we?
So, you need a procedure. Which fear is going to rule your decision? Will it be the Known or the Unknown? Or perhaps the hypothetically Unknown, but still possible? (Sorry, I don't mean to make light of a hard decision, but between these two and the Open Surgery you would have been forced into just five year ago? Consider yourself Blessed.)
This NA Zealot sees that the current data shows that when money is not a factor Xiaflex currently has the edge over NA. (It still pains me to say that, so I do it a few times a day just to free my soul). If you want to add a long-term hypothetical “what if”, that could bend you back to NA.
But then I’m still an NA Zealot. Just repentant in light of the wonderfulness of Xiaflex. But should I need another procedure it’s NA for me. I don’t what the chance of growing 2 heads at the age of 103. 
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01/25/2013 07:54
wach Administrator
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01/25/2013 07:54
wach Administrator
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Re: Confession of an NA Zealot
I consider Xiaflex an additional and good option. For patients it's great to have this additional option. I have no idea whether Xiaflex will become the gold standard for Dupuytren's but at least it's a minimal-invasive option. True, there is some concern about injecting a non-human enzyme into the body and trusting it doesn't do any damage (while watching swelling and bruising). On a short term it is obviously safe and with the number of patients treated immediate severe side effects would have been detected by now. Will it be better than NA? As I said above, time will tell. Let the better one win.
Wolfgang
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01/25/2013 14:24
callie
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01/25/2013 14:24
callie
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Re: Confession of an NA Zealot
What is missing in this discussion is that everyone's situation is different and should be treated accordingly. There are many situations which require surgery, others with an advantage from NA, while others might be better with Xiaflex. Not much differently, RT is effective in only early situations. It doesn't necessarily make one procedure bad and the others good.
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01/25/2013 15:37
mikes 
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01/25/2013 15:37
mikes
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Re: Confession of an NA Zealot
What about the fact (for us pain avoidance types) that NA requires only 1 doctor's visit - i.e. less hassle, less pain, less time - vs Xiaflex?
---Another NA bigot
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01/25/2013 19:21
Randy_H
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01/25/2013 19:21
Randy_H
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Re: Confession of an NA Zealot
Wolfgang, I like your statement hoping that the better one between NA and Xiaflex should win. While there is theoretically room for both I must interject that that is not what is going to happen in my view. Their relative merits will have nothing to do with it. Unless some now unknown side effect does come to light in the years ahead, Xiaflex will eventually dominate NA into irrelevancy in the US. It really already has. It's sad but here's why, again:
Many of us worked for years and years with CHS trying to get them to give NA a fair look. Nope. Then Eaton did his presentation to the American Society for Surgery of there Hand. Boy, I thought that was finally going to do it. Nope. Almost no response. Then Xiaflex gets approved and the CHS pile on it like a loose pigskin during the Super Bowl. Jaw dropping. Just Awe Inspiring.
Again, should anyone doubt this, just go to https://www.xiaflex.com/locator.php and see how many Hand Surgeons near you have done the Xiaflex training and are looking for business. In a 10 mile radius in and around the New York City zip code of 10027 over 56 of these guys are listed. We don't show a singe one doing NA in that same zip. In fact we show a total of 41 who do NA in all of the US and Canada. 41. Most of us have to fly to get to a good NA guy. In New York they just walk to get Xiaflex
How could NA gain any continued traction in the US when most of the CHS already passed on NA when all they had to offer was Open Surgery. But now they have Xiaflex and have suited up for it like lemmings. Who will be the next CHS to learn NA? How about none. I don't like this any more than you other NA fans. But that's what I'm seeing. What am I missing here?
Edited 01/26/13 00:02
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01/25/2013 20:53
Tusk 
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01/25/2013 20:53
Tusk
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Re: Confession of an NA Zealot
If I am not mistaken, you don't have to be a Certified Hand Surgeon to administer Xiaflex. So you might have a rheumatologist, an ortho (non CHS), or another type doc offering the procedure. Personally, I would want a CHS who sees a lot of DD to do any sort of procedure on my hands. Too many mistakes can be made by someone who doesn't specialize in the hand and have a lot of familiarity with the disease.
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01/26/2013 05:54
flojo
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01/26/2013 05:54
flojo
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Re: Confession of an NA Zealot
Randy, money talks! That is money in the coffers of the pharmaceuticals. NA is reasonably priced and a piece of cake. That is not to say that some cases need Xiaflex.
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01/26/2013 07:58
Randy_H
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01/26/2013 07:58
Randy_H
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Re: Confession of an NA Zealot
flojo,
Yes, I agree. That was the basis of my Marketing and more Marketing rant. But CHS are a tough sell. There is something about Xiaflex that appeals to them in the first place. They don’t care about pharmaceutical profits, unless many bought Auxilium stock. And perhaps some did. But I’m connived that for them what sets Xiaflex apart from NA is their fear of nerve damage from doing a “blind procedure” where they can’t see what they’re doing (NA). The necessary patient feedback loop was not attractive to them. Eaton could stand on his head with all the proof to the contrary; they still want to be in control and apparently don’t want to partner with a patient for a good outcome. This would indicate that they’d rather not be beholden to a patent’s help in guiding them from making a mistake.
But if you look at Xiaflex as a heat seeking guided missile that you aim in the general direction and Fire and Forget….well now we have something. Let the enzyme make those decisions for them and they are all on board. Their Fannies are now covered by the FDA that signed off on this approach and they are off the hook. It’s no longer “blind” as the enzyme does all the work automatically.
Actually Xiaflex has proven to be brilliant, it does in fact work as advertised as Denkler expounded. It took everything BioSpecifics had to get FDA approval. It is seem as the Magic Bullet allowing them to avoid OS, which despite their pervious undying promotion of it they apparently now love avoiding. I get it.
While money played a part you have to look at from the perspective of the CHS. They just love this stuff and I think so for these reasons. They were afraid of NA but not of Xiaflex. Misguided as it is.
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01/26/2013 15:50
callie
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01/26/2013 15:50
callie
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Re: Confession of an NA Zealot
"A study where patients were treated with these collagenase injections showed a recurrence rate of 67% in the MCP joint and 100% in the PIP joint."
That is where the money comes in. This account of the procedures (including Denkler's assessment) is interesting. Also, a nice reference for Wolfgang and the International Dupuytren Society.
http://en.wikipedia.org/wiki/Dupuytrens_Contracture
Edited 01/26/13 17:56
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