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04/04/2011 13:46
BrightonViking 
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04/04/2011 13:46
BrightonViking
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New user
Hi
Im 28 and have had dupuytrens for about 8 years now. I have been told im very young to have it! Its no consolation!
I have already had one operation on my hand and its about time for another.
At first I only ever had a lump on my knuckle of my wedding finger. I had an operation and had it removed. I was diagnosed with it as a ganglian, gristle, benine tumor until it was finally diagnosed as dupurytrens.
My Grandmother has it and has just given up on it, my mum also has it. They have both had operations and it obviously keeps coming back.
Mine has got particularly bad, the root is right down to the bottom of my palm and it pulling my whole hand closed. It often goes black when its cold and its very painful when its cold or gets knocked. As ive been told I am young to have it I want to avoid having as many operations as possible as it will get harder to operate on.
My mum has just seen a hand specialist this morning and he told her that the UK has just licensed a new injection. She can't remember what its called but its American and costs £800. From web research I think he may be referring to Xiaflex? Please confirm if anyone knows!
Its painfull, looks horrible and my wife and I hate the fact that I can't put a wedding ring on my finger!
Any help or assistance would be great. If I have an op every 5 years even, the scar tissue by the time im 50 will be awful so i need to do something!
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04/04/2011 15:24
callie 
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04/04/2011 15:24
callie
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Re: New user
Everyone has different experiences with scar tissue, but my scar tissue is not noticeable at all after my surgery. What has the surgeon said about your situation? It would seem that your best bet would be the procedure that would be best to limit recurrence.
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04/04/2011 16:16
wach  Administrator
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04/04/2011 16:16
wach Administrator
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Re: New user
I am sure your Mum was talking about Xiapex (that's what it is named in Europe). You find details about it on this web site, just look for "collagenase" or start at http://www.dupuytren-online.info/dupuytren_collagenase.html. I am not sure it is already available in the UK but in any case, it only helps when the finger is already contracted.
It might make sense to read the overview of the disease and available therapies on this web site. It provides a lot of information. Maybe just start at the home page http://www.dupuytren-online.info/index.html and work your way through. If you have questions you are welcome to ask them in this forum. A lot of experienced patients are around and can provide great insight into Dupuytren's and its treatment.
Wolfgang
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04/04/2011 19:08
spanishbuddha Administrator
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04/04/2011 19:08
spanishbuddha Administrator
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Re: New user
I'm not sure Xiaflex (collagenase injection) is approved for use in the UK by NICE for treatment on the NHS. See http://guidance.nice.org.uk/IP/831
I know that some hand units are doing trials with the manufacturer, maybe this is what your consultant was referring to? Or perhaps it's licensed for use privately?
I'm sorry to hear of the problems with your hand(s) at quite a young age. This typically tends to be aggressive and not responding well to the few treatments available. If you take time as suggested by Wolfgang to review this site there are several options with varying degrees of success.
In the UK, medical treatments on the NHS are at least: Radiotherapy (RT); Needle Aponeurotomy (NA); and Surgery. Maybe also cortisone injections.
Only your consultant can really advise you, but you need to see a hand specialist who knows all the current treatment options and those in development or under research.
Possibly, your best option before surgery is NA (or the collagenase) to straighten any contractions, the RT to slow down or even stop for now any active disease. But, I am not a doctor, just going on other peoples stories, my own experience and research. Best wishes.
Edited 04/04/11 22:09
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04/05/2011 09:18
BrightonViking
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04/05/2011 09:18
BrightonViking
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Re: New user
Thanks for your help everyone. I have an appointment on Thursday and will bring it up with the consultant.
I am wondering what to do if they don't agree with any other form of treatment. Can I go to another county?
Im guessing if your PCT has that stance then you are stuck with it!
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04/05/2011 17:32
spanishbuddha Administrator
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04/05/2011 17:32
spanishbuddha Administrator
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Re: New user
BrightonViking:
Thanks for your help everyone. I have an appointment on Thursday and will bring it up with the consultant.
I am wondering what to do if they don't agree with any other form of treatment. Can I go to another county?
Im guessing if your PCT has that stance then you are stuck with it!
You can ask for a referral to another PCT that does provide the treatment you need. This requires you to do a lot or all of the leg work.
You can also find out how to get your PCT to provide the treatment. Just ask them.
I know I make it sound easy, but I also know it's not from personal experience. But this really is a case of where you can dig around yourself in anticipation of the (negative) answer and be prepared how to counter it. In my own case I am engaging with my PCT but got impatient and went abroad anyway because I was worried that time was passing and my hand was getting worse.
Good luck with your appointment. Be polite, enquiring, firm and don't accept things at face value.
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