| Lost password
96 users onlineYou are not loggend in.  Login
Why waste time with Xiaflex?
 1 2 3 4 5
 1 2 3 4 5
02/08/11 20:02
bstenman 
02/08/11 20:02
bstenman 
Re: Why waste time with Xiaflex?

I well understand the feelings of desperation that come with the loss of hand function with Dupuytren's. I have had to cut short my professional photography due to Dupuytren's. But in terms of knowledge of treatments we are all coming from a place of ignorance. This website is a tremendous help but we are still dealing with anecdotal information coming from a relatively tiny number of people with the disease who have undergone various treatments at various stages of the disease.

XRT has been used for decades. NA has been practiced for even longer, though not in the USA where it is still a new procedure that is not a widely accepted approach to Dupuytren's by hand surgeons in this country. Xiaflex has only recently been approved and the great majority of Auxilium approved doctors who are providing the injections are not hand surgeons and have no prior hands on experience with treating Dupuytren's.

It will be 3-5 years or longer before we will know the longer term efficacy of Xiaflex for treating Dupuytren's and the rate of complications as compared to open hand surgery or NA procedures. With a faciectomy there is an approximately 6% rate of complications, and some can be very severe with loss of the use of a hand. With NA there is an approximately 1% rate of nerve damage and I would expect that the this is compounded in a sense over time with repeated procedures as the cumulative odds are going to be 3% for someone who has 3 NA procedures performed over a 10-15 year period.

We do know based on the very few people already treated with Xiaflex that there is a higher risk from complications (ligament and tendon damage) than occurs with NA. It would be great if there was a perfect remedy that was 100% effective and lasted a lifetime and had a zero rate of complications. But we simply do not know at this time and in the USA any problems with a drug are very difficult for a citizen to obtain from the drug manufacturer and the process can take many years. One need look only at the history of statin use in the USA for examples where drug companies literally buried their mistakes and did so with the complicity of the FDA.

If Xiaflex has a 4% rate of serious complications and it lasts only for 3 years, and I would need to spend on average $1300 per year, and over a 10 year period have a cumulative risk factor of 12%, my take on whether to have this treatment is going to be quite different than if it is determined to have a 2% risk rate of complications and the treatment lasts for 6 years. At this point in time no one knows, no one. We are all operating on the basis of hope but doing so in ignorance of the probable risks and the probable "longevity" of the treatment on the "average" Dupuytren's sufferer.

Xiaflex only treats the effects of the disease at a given point in time. The only therapy that has been proven to slow or halt the progression (and based on thousands of patients treated over a period of decades) is XRT.

With my own hands I have had XRT (100% effective on the hand where the chords were least developed at the time) and a NA procedure, both done in the spring of 2007. Now I need a procedure done on my primary hand and my view at this time is that NA is safer but may be less effective in my specific situation.

I have decided to drive the 4 hours each way to have my hand examined by Dr. Denkler so that I can get his advice on whether to do a Xiaflex injection or a NA or possibly both procedures but in different locations on my hand. I am making the trip to see Dr. Denkler as he is one of the earliest practitioners of NA in the USA and is a certified hand surgeon and is approved for providing Xiaflex treatments. My hope is that his knowledge will enable him to make an informed judgment as to the best course of treatment in my specific situation. Time will tell if I am correct or not but I am acknowledging my own ignorance and doing what I can to gather additional information from the best source I can.

02/08/11 21:38
David26

not registered

02/08/11 21:38
David26

not registered

Re: Why waste time with Xiaflex?

some good comments in this thread, the current options for treating DD fall far short of a cure of any sort and we all have the common goal of finding the best treatment for ourselves that we can. There is a time and place for every treatment we discuss -- RT, NA, Xiaflex, surgery. Some treatment options work better for your specific symptoms and disease progress but no one treatment is undesirable in and of itself. All can give great results and all can come up short. Nature of the disease.

I don't see any hope for that perfect fix anytime soon. My hands will get the best treatment I can decide on after weighing my options. I just hope progress can be made so that better options are available to my children should they inherit this disease.

Edited 02/09/11 00:32

02/10/11 17:05
dave t

not registered

02/10/11 17:05
dave t

not registered

Re: Why waste time with Xiaflex?

Some of the responses to xiaflex in this thread sound very angry, without having direct experience. As a DD sufferer, I totally understand the anger, but please make comments about xiaflex based on your experience with it, rather than assumptions and anger.

Also, the comment about fewer than 100 xiaflex treatments is incorrect. There are currently thousands of patients who have been treated with xiaflex; this according to one of the doctors who participated in the phase 3 trials and who treated me.

My own experience with xiaflex, after having prior experience with NA, has been positive. After two NA procedures, my nodules returned in 9-10 months with even greater contraction. I then had two xiaflex procedures (consisting of multiple injections) and the results after 8 months are far better than with NA. Less recovery time, no scar tissue, reduced nodule size, much straighter fingers. Of course, long term results are unkown at this time.

There are two issues with xiaflex (1) cost and (2) danger of damage to the PIP joint. On cost, please read this forum for suggestions of how to fight ins. cos. for treatment . Auxillium also has a foundation to assist with reduced cost xiaflex. Re: the PIP joint, I was told by my doc who particpated in the phase 3 trials that straightening the PIP joint whether with NA or xiaflex, brings much greater risk of snapped tendons. He strongly advised that I live with the PIP contracture. I agreed because the two other treatments with xiaflex on other parts of the hand were so successful. I took my doctro's advice and left the PIP joint alone for now.

02/10/11 23:18
moondanc 
02/10/11 23:18
moondanc 
Re: Why waste time with Xiaflex?

@dave t:

My own experience with xiaflex, after having prior experience with NA, has been positive. After two NA procedures, my nodules returned in 9-10 months with even greater contraction. I then had two xiaflex procedures (consisting of multiple injections) and the results after 8 months are far better than with NA. Less recovery time, no scar tissue, reduced nodule size, much straighter fingers. Of course, long term results are unkown at this time.


Please keep us up to date on your progress. I was at the stage you are with fairly good results from Xiaflex after 8 months but the results did not continue. Are you using a splint? How many fingers/hands overall are affected by DD and how would you characterize your disease--mild, moderate, agressive?

Best,
Moondanc

02/13/11 23:53
eastwind 
02/13/11 23:53
eastwind 
Re: Why waste time with Xiaflex?

What does "straightening the PPIP joint mean? And just what is the PIP joint??
Newbie-Eastwind

02/15/11 16:52
dave t

not registered

02/15/11 16:52
dave t

not registered

Re: Why waste time with Xiaflex?

some replies to recent questions

disease is moderate in right hand; less severe in left hand which was not treated at this time. contraction in treated hand was +50 degrees + before treatment; now is -5%

the injections were somewhat painful but nothing too bad and of short duration. The manipulation was under local and I felt absolutely no pain during porocedure and, honestly, not very much after manip. I had some bruising and swelling but, again, pretty minor. Used xiaflex treated hand one day after manipulation and in a week or so had full movement and absolutely no pain. Total healing of the most severe site in no more than two weeks.

used splint for four months at night. I keep stretching hand and have not noticed return of DD in treated hand.

PIP joint is little finger second joint. I am not a doc so there might be a better way to describe it. My doc, who particpated in phase 3 trials was pretty clear that the result of a popped tendon in that joint was far worse than living with the current state of contration, and that the risk of popping was more than he advised accepting. He left open the door for future treatment if the contration progressed in that joint, which it has not to date.

I sense some progression of DD in the untreated hand and am watching closely. I do not (yet) sense any progression of the disease in the treated hand.

I am located in the Boston area, if you are looking for a doc with experience in New England.

02/15/11 18:43
flojo 
02/15/11 18:43
flojo 
Re: Why waste time with Xiaflex?

In my consultation with Dr. Denkler last week, he says that Xiaflex (he just refers to it as the enzyme) is another tool in the toolbox. He has used 91 vials of Xiaflex so far in treating Dups. He says in some places, Xiaflex is preferable to NA. In the case of my little finger that has a cord on the inside of the first joint, it would be better to use Xiaflex because there is a nerve under that area. Xiaflex does not damage nerves, but NA would have some risk of damaging that nerve because it is so close.

Dr. Denkler says the greatest percentage of treatment for Dupuytren's is by NA, followed by the enzyme and he still does a few surgeries.

I don't have to rush, but I am looking at possibly a combination of Xiaflex and NA for the cords that are still in my hand. RT does not work on cords which is similar to scar tissue.

When I get the chance, I will post a full summary of my consultation with him under a separate Title.

02/15/11 19:50
Mike S

not registered

02/15/11 19:50
Mike S

not registered

Re: Why waste time with Xiaflex?

Thanks Flora. Very informative post (as usual)

02/15/11 22:59
David26

not registered

02/15/11 22:59
David26

not registered

Re: Xiaflex or NA?

flojo, thanks for sharing that. Xiaflex is still essentially a new treatment and it will take a few years to get a better feel for what the outcomes are likely to be. Since is it an enzyme equivalent to needle surgery, a similar result can be expected (recurrence rates are a big question as with all forms of correction). Sounds plausible that NA works better in some situations and Xiaflex in others. Some people may have a skin tear or other setback with either choice. Some people may get an immediate good result.

I have read that the best results for Xiaflex and NA is in the palm. Treatment in the fingers have less correction and more recurrence. Nature of the disease.

02/15/11 23:35
moondanc 
02/15/11 23:35
moondanc 
Re: Why waste time with Xiaflex?

David26:
flojo, thanks for sharing that. Xiaflex is still essentially a new treatment and it will take a few years to get a better feel for what the outcomes are likely to be. Since is it an enzyme equivalent to needle surgery, a similar result can be expected (recurrence rates are a big question as with all forms of correction). Sounds plausible that NA works better in some situations and Xiaflex in others. Some people may have a skin tear or other setback with either choice. Some people may get an immediate good result.

I have read that the best results for Xiaflex and NA is in the palm. Treatment in the fingers have less correction and more recurrence. Nature of the disease.

In addition to my other concerns about Xiaflex, one is only allowed one "dose" every 30 days (I think this is what I was told). Following study protocol it appears that shouldn't be broken up into more than 3, possibly 4 injections in order to remain potent enough to break the cords. Each of the four times I've had NA I've had considerably more needle breaks than that--upwards of 15 or 20 on each hand. I don't know if it then follows that NA would last longer since there would be more cord interruptions?

Moondanc

 1 2 3 4 5
 1 2 3 4 5
information   patients   fingers   treated   injection   surgery   procedures   recurrence   complications   treatment   disease   contracture   Moondanc   treatments   injections   experience   Dupuytren   results   new-treatment-option-for-dupuytrens   Xiaflex