Re: the place I found the info on the PIP involvement only and hyperextension of the MCP. It was somewhere on the International Dupuytren Society website as I remember seeing the logo in the corner. I thought perhaps it was on the Literature and Training section, but I am unable to find the exact place. I was just clicking links and doing some surfing looking for info, so it could have been anywhere linking to that page too. Sorry!

Thanks everyone for the replies.

The problem is no one in Australia knows anything at all - treatment options are limited because the medical field just don't know any options other than surgery, and if they do, they don't have the experience; no one knows when Xiaflex will be released or how much it will cost; and finding a trial in damn near impossible despite my repeated research (I don't think I qualify anyway)... As I said in my last post, Australia is so far behind! As much as I'd love to take off to France for NA, or fly to Us for Xiaflex - this just isn't a financial possibility for me (that and I have a 1 and 3 year old).

Xiaflex sounds great in theory, but I just don't think there is enough long term research yet on effects. Being 34, I hopefully have many years of life to go - and I sure at some point will need more intervention for this condition.

I was swayed by NA due to the fact it can be repeated. I plan to use dsMO and vitamin E to reduce scar tissue. I don't think there will be much scarring anyway, as I am really in the early stages of the disease, and therefore, surely NA will be minimal? I'm quite hesitant about doing anything anyway - I'm wondering if I start to meddle with it, if it will flare up and be a problem. At this stage I have no cords, just a couple of nodules and some skin puckering in the hand. My ring finder is beginning to pull forward to about 30 degrees. I did however, think NA was worth the try.

If anyone knows anything about Australian treatment options, ixiaflex release or trials, t would be great to get more info on this forum.
I will share my experience with DR Tomlinson in a few weeks. Fingers crossed!

Jaci,

I will try and get you an answer on the timing of the introduction of Xiaflex in Australia as well as New Zealand for the person from that country. I will contact the rep I met and post the answer here asap. I have been very impressed with the people I have talked to and met at this company and I am not easily impressed.

Diane's comments are quite pertinent and all of the trouble we have had getting answers and proper treatment motivates me to do something about it. I have followed The Mayo Clinic's info on DD for years as the disease attacks people of northern European descent most often, or so the experts thought, and I was born in Minnesota of Norwegian, Dutch and Swedish extraction. The Mayo Clinic does good work.

Diane is right in saying no one knows a damn thing about this disease and Auxilium (the makers of Xiaflex) is at least trying. The breaking of the cords is key in either NA or Xiaflex and it occurs to my logical side that a chemical/enzyme that weakens the cord first might have more success. You are correct to be cautious as to long term effects. The disease is absolutely unpredictable, however, and concerns as to side effects will lessen with time and the progress of the disease. At least it has with me.

A couple of points. My information is an ultrasound cannot be definitive in locating the nerves in the hand. They are too small. Again everything I state here is my own experience and judgement and you all must do your own research. As to light anesthesia my last doctor wanted to do a nerve block of the arm. Essentially you anesthetize and isolate the arm but you are awake. I had this done years ago to have a broken finger pinned. The hospital would not approve it as it was not common procedure for NA or Xiaflex in the US. Basically it was a cost issue as, with either a nerve block or "light" anesthesia, you have to have an anesthesiologist present. If I had a choice I would do the nerve block. My doctor has since left the hospital he was affiliated with for another one.

Thank you all again for the great information. I will post back on the info I get from Auxilium and after my July 2nd doctor appointment. Take care!

Jaci,

I have the same problems with strength and attribute it to the inability to exercise and work out as I did before. The unnatural use of my hands also effects the other joints in my body such as the wrist and shoulder. I should be, and will be, more creative in exercising as my favorite choices, cycling and skiing, are not possible, nor is lifting weights.

As to cost, in this country's screwed up insurance-medical industry nightmare, I can't even get copies of my bills as the insurance company reluctantly pays them. Auxilium helped after the insurance company initially refused to authorize the treatment as it was "experimental" which it is not by definition when you get FDA approval. My research indicates Xiaflex treatment is about $7-8,000 US dollars but I can't definitively confirm that fact. This puts the cost above NA but about 1/2 of surgical interventions like PF.

I don't know what your situation is or if you have insurance but I do know if I lived in Canada this would have been taken care of long ago. France and other countries as well as their medical systems are superior to the US. I will get more info and let you know.

Take care,

Brian

Brian_PDX:

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Jaci,


A couple of points. My information is an ultrasound cannot be definitive in locating the nerves in the hand. They are too small.