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Desperate for Xiaflex
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03/20/2009 09:56
handhurt1 
03/20/2009 09:56
handhurt1 
Desperate for Xiaflex

Here in the U.K it is frustrating as the consultants dismiss the use of collagenase (Xiaflex) either through ignorance or the fact that they like cutting flesh.
Some 20 years ago Mr Flemming (now emigrated to Australia) in Colchester England operated to remove cords from my left hand which affected my little finger. I suffered post operative trauma and apart from considerable discomfort it was almost 2 years before I regained anywhere near full movement and the area is still quite numb.
I now find myself in the situation where all fingers of my right hand are seriously affected and the consultants are saying that I should have an operation to remove the cords and a skin graft before it is too late suggesting that I need to make a decision in the next 4 weeks. Natuarily I am reluctant, bearing in mind my previous experiance.

Is there anyone out there who can supply me information on any doctor/clinic/hospital anywhere in the world where I might be able to get injected with Xiaflex.

03/20/2009 10:34
wach 

Administrator

03/20/2009 10:34
wach 

Administrator

Re: Desperate for Xiaflex

Xiaflex is not (yet) approved by FDA for general use. Still getting on a trial is probably very, very difficult, specifically outside the US or Australia. If you need to have something done now why not try PNF (needle fasciotomy)? It does the same as Xiaflex but mechanically rather than enzymatically. The are some clinics in the UK offering PNF.

I understand your reluctance towards surgery but surgery with skin craft still seems to be the best way to delay recurrence. There is cinsiderabel experience with skin grafting in the UK.

Wolfgang
PS: I wouldn't think that 4 weeks would make a big difference.

03/20/2009 13:54
jimh 
03/20/2009 13:54
jimh 
Re: Desperate for Xiaflex

Never let yourself be pressured into a surgery. I have to wonder if that 4-week timeline is derived from business and financial facts, not medical facts.

Look into needle aponeurotomy immediately. You guys in the UK are lucky, it's a short trip to Paris where you can see the most experienced practitioners of NA.

03/20/2009 18:08
ArtistHands

not registered

03/20/2009 18:08
ArtistHands

not registered

Re: Desperate for Xiaflex

I was in the clinical studies trials most of last year for collagenase injections at UCLA in Los Angeles. Had never had my hands operated on or had needle aponeurotomy . My hands are quite distorted with two fingers on each hand an also in both thumbs. Bad case but was familiar with the possibility of collagenase enjections for a long time and waited and was lucky to get into the trials. I was pleased with the success I saw in others in the study and the initial success in my one finger they worked on. I now have a choice to either wait for the collagenase to become available on the market (I was told sometime next year) or have other procedures. What’s the rush? I’ll wait. The doctor probably needs to make a house payment and wants you to get the operation.

03/21/2009 09:51
handhurt1 
03/21/2009 09:51
handhurt1 
Re: Desperate for Xiaflex

Thanks for all the replies.

Some 6-8 years ago I asked the consultant about the needle therapy that you suggest, as I sat in the waiting room next to somebody who had successfully had a finger released in a matter of minutes and was to have another done. The consultant said that because of the nature of my DC (particularly aggressive with very thick cords) that treatment would not be appropriate or successful. He did however inject with steroids.
The DC seemed to lay pretty well dormant from that time until the last 5/6 months. Since October I have encounted extreme irritation and stinging sensation when I touch the area (with very little pressure). The palm and fingers have contracted very quickly over this short period of time and I believe that the consultant requires me to make a commitment to surgery before it is too late (bearing in mind that there is an 18 week waiting list before they operate).

The system in UK is not at all like USA. I do not believe there is any pressure on doctors/surgeons to obtain business for their hospitals/clinics. The Health Service is funded nationally for the benefit of all, the same treatment and attention for both rich and poor.

Still interested in any further comments.

Thanks

03/23/2009 21:57
BobN 
03/23/2009 21:57
BobN 
Re: Desperate for Xiaflex

I'd go to Paris before I let any Doc or Consultant cut it out. If the NA Experts say they can't then you have reason to commit. Don't be fooled by surgeons that don't know about the real possibilities of NA. If it looks like a nail, they will always use the hammer - and everything looks like a nail to them.
Get expert NA advice first, then you can commit with a clear path.
Best of luck and speedy recovery!

06/01/2009 14:48
george eastman

not registered

06/01/2009 14:48
george eastman

not registered

Re: Desperate for Xiaflex

See:

http://www.philly.com/inquirer/breaking/...A_priority.html

Approval expected by Aug. 28, 2009.

06/01/2009 15:58
Mike S

not registered

06/01/2009 15:58
Mike S

not registered

Re: Desperate for Xiaflex

George,

If time is of the essence, it might be best to NOT depend on near-term availability of Xiaflex. Another option to consider is NA - preferably by one of its leading practitioners. You may be able to obtain a free evaluation by sending pictures via e-mail. Based on geographic proximity, you may want to consider Dr. L in France. Otherwise, options include Dr. Eaton in Florida, Dr, Pess in New Jersey, and Dr. Denkler (with whom I had NA performed) just outside San Francisco.

06/22/2009 19:13
bstenman 
06/22/2009 19:13
bstenman 
Re: Desperate for Xiaflex

Problem has been the ability of the company licensed to manufacture the Xiaflex in quantity. It has delayed trials for years and limited the number of patients in the trials performed over the past 12 months. The company involved has been saying "soon" for many years so I would not rely on their predicted availability of the product. It has not received full FDA approval for sale to the public even if it was being produced in sufficient volume.

06/22/2009 23:54
KatherineG 
06/22/2009 23:54
KatherineG 
Re: Desperate for Xiaflex

"The system in UK is not at all like USA. I do not believe there is any pressure on doctors/surgeons to obtain business for their hospitals/clinics. The Health Service is funded nationally for the benefit of all, the same treatment and attention for both rich and poor".


Let us not kid ourselves with the NHS. It means very often that we are a number of years behind other countries and many of us, including me, pay for private health care. Doctors and surgeons very often insist on old fashioned treatment in the NHS.

You are talking about your hands. Get advice, possibly from Dr Eaton and then go to France and pay for N/A if it is sutable.

I cannot believe the makers of Xiaflex are deliberately delaying its availablility. More likely there are many hurdles to cross before it is made available.

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aponeurotomy   treatment   mechanically   possibilities   dupuytren-online   consultant   available   surgery   recurrence   collagenase   availability   practitioners   complications   difference   Desperate   Xiaflex   interesting   well-informed   reimbursement   availablility