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Why waste time with Xiaflex?
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02/01/11 22:35
bstenman 
02/01/11 22:35
bstenman 
Re: Why waste time with Xiaflex?

Xiaflex has been used on fewer than 100 people and only being used more widely over the past 6 months. There have been fewer than 40 patients receiving the treatment in total in Northern California even though the drug trials were done at Stanford Medical.

To have relevant information you need 50 patients at the same point in the disease as you are and wait 4 years to see what happens. It will be at least 5 years before anyone will really know the long term benefits or side effects from Xiaflex or the incidence of complications (tendon and ligament damage). At this point every patient is in effect a guinea pig, and is hoping that the potential benefits outweigh the potential risks.

It may turn out that people with a prior NA fare differently or people at a later stage or of a different age group or physical activity or health level have different outcomes. With surgery in general the more often a procedure is performed the better the outcome as the individuals learn by doing. With Xiaflex that experience does not exist but with a handful of physicians in a few locations around the country.

Part of the problem with Xiaflex is that the insurance companies are only paying for treatment of patients with severe contractures or where a nodule interferes with a joint. People may benefit more at the early stages but we will not know until Xiaflex is used outside the USA in countries where the corporate health care industry does not make the rules as to who gets what treatment and when.

02/01/11 23:59
ellenpao 
02/01/11 23:59
ellenpao 
Your numbers need adjusting I think.

Fewer than 100? I think the number is much bigger. My doctor in NJ alone has done about 50.

I'll keep you all posted with long-term results - my injections were on January 12th. So far, so good.

Oh - and BTW, I'll gladly be a guinea pig if it helps others.

02/02/11 00:58
bstenman 
02/02/11 00:58
bstenman 
Re: Why waste time with Xiaflex?

Ignorance is certainly bliss in the short run and hopefully the Xiaflex treatment will be successful with fewer side effects as people learn more. One can also hope that at least in the USA the cost comes down when Auxilium gets their production problems fixed - not likely with our profit driven medical establishment and capitalist culture but one can hope.

I would appreciate the name of the doctor that has done 50 procedures. I found called all the doctors on the Auxilium physician lookup as approved and found that only one had done more than 5 procedures and that doctor had done 20.

The trials involved a very small number of participants and half were give a placebo injection. Compared to the numbers for open hand surgery or NA this is still a trial procedure. You may be happy to be a guinea pig but that changes nothing.

I am bothered by people assuming that becomes any drug is FDA approved that it is completely safe.

I too would take the chance, even though it is not a smart thing to do at this point in time, but at $8000-12,000 it is more than I can justify paying.

02/02/11 21:02
ellenpao 
02/02/11 21:02
ellenpao 
Re: Why waste time with Xiaflex?

bstenman:
Ignorance is certainly bliss in the short run and hopefully the Xiaflex treatment will be successful with fewer side effects as people learn more. One can also hope that at least in the USA the cost comes down when Auxilium gets their production problems fixed - not likely with our profit driven medical establishment and capitalist culture but one can hope.

I would appreciate the name of the doctor that has done 50 procedures. I found called all the doctors on the Auxilium physician lookup as approved and found that only one had done more than 5 procedures and that doctor had done 20.

The trials involved a very small number of participants and half were give a placebo injection. Compared to the numbers for open hand surgery or NA this is still a trial procedure. You may be happy to be a guinea pig but that changes nothing.

I am bothered by people assuming that becomes any drug is FDA approved that it is completely safe.

I too would take the chance, even though it is not a smart thing to do at this point in time, but at $8000-12,000 it is more than I can justify paying.


I am disturbed by your response to my post, and resent being called ignorant. For those of us who have a severe form of the disease, the option of Xiaflex is a godsend, and we happily will be trailblazers for the rest of you. I'll gladly let others benefit from me taking the chance - for me, it WAS the smart thing to do.

The doctor is in NJ, and his name was mentioned in my journal posted earlier.

Edited 02/02/11 21:03

02/03/11 00:48
Randy_H 

Moderator

02/03/11 00:48
Randy_H 

Moderator

Re: Why waste time with Xiaflex?

David 26 had a great post on this thread on 12/20

David,

Thank you so much for finding and sharing the above link to this great discussion. Finally we have wide spread acceptance of NA as a valuable option. Those wild patient arguments about NA's viability and safety back on the BioSpecifics Forum seem distant now. The Internet driven recruitment of Eaton was every bit as significant to those of use fighting for NA as we thought. It's so rewarding to see how far NA has come.

I find the discussion fascinating on a personal note as well: Dr. Meals, after seeing the final poor result of the Open Surgery he did on my left hand in 2003, as opposed to the NA done by Eaton in 2005 on my right, instructed me to *avoid* further Open Surgery and use NA indefinitely. This was before he had a single shred of confidence in NA. He was surprised that Eaton had done a great release on my PIP joint without nerve damage. Things have changed. Eaton certainly has earned his seat at the table as the champion of NA!

02/07/11 00:11
moondanc 
02/07/11 00:11
moondanc 
Re: Why waste time with Xiaflex?

I recently had my 3 year followup/checkin for the FDA Xiaflex trials--initial injection Dec. 2007. Prior to Xiaflex I had NA on the finger. Xiaflex lasted less than one year and I've subsequently had two more NAs on that finger. At my visit (during the blood draw) I was able to talk to several other patients and--as with my last visit--found some disappointment. None of their treatments lasted more than one year AND two of them--after having DD for many years which had progressed slowly- had a rapid spread of DD once they got Xiaflex injections. Counting me, this now makes 4 people in the fairly small (less than 50, I think) trial at my site who are fairly convinced that Xiaflex acceleratd the disease AND didn't last in the treated hand. The most aggressive disease I have is in the treated finger (prior to treatment only my PIP joint was affected with one cord in my ring finger and now in addition to that, it has extended to MCP joint and I have a cord on each side of that finger and very aggressive disease in the adjacent pinkie finger). Prior to Xiaflex, the only DD I had was in the treated finger--I now have it in all four fingers of my right hand and all four fingers of my left.

Study docs said there really isn't a lot of long term data *yet* on how long Xiaflex lasts but that open hand surgery still has longer term results. They are now doing Xiaflex at this site-- $3200 for one "dose" of Xiaflex which can be split up into several different injections (in the study it was split up into 3; Dr. Denkler's website reports a "failure when split up into 5 injections) plus physician costs. (FDA limits one time treatments to 1 "dose" every 30 days, I believe) They are using anesthesia on the second day when they "break" the cord and said they are having better results because they can be more aggresive when trying to break and manipulate the cord now that they don't have to worry about patient pain.

Caveat emptor,
Moondanc

02/07/11 04:13
LubaM. 
02/07/11 04:13
LubaM. 
Re: Why waste time with Xiaflex?

The discussion above reinforces my "own opinion" that it is way too early to know whether Xiaflex is effective long term. Was it approved by FDA too soon? Its very disturbing to read that it can precipitate new agressive DD. Wasn't the whole point of it that it should be an improvement over NA?

For me...Xiaflex has too many side effects.

Edited 02/07/11 04:14

02/08/11 04:14
coachG 
02/08/11 04:14
coachG 
Re: Why waste time with Xiaflex? Why not?

My experiences with 4 different procedures:

Surgery came first. Right ring finger MIP & PIP. No other joints affected (still no other affected areas). Not a "hand surgeon" which may have had an impact on return of DD. Recurrence after 3 years & contracted to 90 at PIP after 4 years.

NA on same finger. Straight! Recurrence & NA again 2 years later--again at about 90. Straight, but scar tissue starting to cause problems (scar tissue from surgery). NA a third time did very little.

NA on pinky of other hand. Very large nodule was hard to get to & very little straightening occurred--later realized there were 2 large nodules affecting PIP of pinky. Nodule on outside of MIP knuckle as well, nothing done to it.

After NA procedure on pinky had RT to affect nodules growing on palm beginning to affect middle and ring fingers hoping to slow/stop growth. Would not affect pinky nodules from what Dr. said because of it's progression to that point. Nodules have appeared to stop growth but haven't shrunk. Still have throbbing sensation at times in palm & palm feels warmer at times. No idea why this is happening...psychosomatic response??

Xiaflex on ring finger of first hand. Large nodule on finger broken free!! But, scar tissue buildup in palm is a problem for further NA and Xiaflex. Almost 8 months later & contracture might have progressed slightlty but I'm not certain. Banged the backside of the finger pretty hard a week ago & am having a lot of pain, to where I can't shake hands.

Xiaflex on pinky late summer 2010. This is where it was found to have 2 nodules causing the contracture (in addition to another nodule on the outside of the MIP joint. Release nearly straightened the finger, but the 2nd nodule is still causing contracture. No progression of contracture as of today.

My take...
NA was the best option, but I chose surgery first because I didn't know of NA & trusted my family Dr. & the surgeon. Because of surgery NA is now not an option. Xiaflex worked & I won't hesitate to try it again on this finger.
NA didn't work well on my pinky on the other hand, & Dr. Kline tried real hard to get it to work. Nodules were too big & the PIP joint is a tough one to straighten, especially on the pinky. Xiaflex worked & I'll do it again on the pinky to attack the 2nd nodule.

If I (we, you) don't keep working the Xiaflex through we may not realize benefits from it or other related therapies. At some point I'll play guinea pig, which I did!

Not sure if "less than 100 people have had Xiaflex", but my Dr. has treated me twice, two others I referred & two others who found him on their own. that makes 5 in Walla Walla, WA. In any event, good look to everyone in whatever path they choose.

CoachG

02/08/11 05:44
callie 
02/08/11 05:44
callie 
Re: Why waste time with Xiaflex?

CoachG,

Thank you for your comments. You said, "Not a "hand surgeon" which may have had an impact on return of DD."
I think that is extremely significant. I think there is a feeling among some surgeons/people that Dupuytren's surgery is routine and any good surgeon can do the job. That is a problem.

02/08/11 06:57
coachG 
02/08/11 06:57
coachG 
Re: Why waste time with Xiaflex?

Agreed on the surgeon idea Callie. If I knew now what I knew then I surely would've followed a different path. Unfortunately I have had to pursue other options for my treatment which led me to Xiaflex. I chose to take the step not knowing the long-term risks with the drug--my choice. If there are any repurcussions my hope is that it stays within my fingers & hands...

I hope that as others come to this site that they can discern all of the information & make the decision that best fits their needs. As a younger sufferer of DD & as a person who needs his hands for his job, I felt I had to make this decision. I don't see surgery as the best option at this point. I'm 46 right now & am 10 years into this process of dealing with DD in both hands. I have no regrets as of now concerning Xiaflex. If any issues arise I will be quick to head to this site & share. All of us who suffer with this disease have our own stories, our own issues, & our own decisions to make. However, the more we can share & the more information we can get out to this community, to the doctors around the world, to the pharmaceutical companies, & to whoever else can help us understand this disease the more all with DD can benefit.

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