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My Story
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12/27/06 09:21
born2run

not registered

12/27/06 09:21
born2run

not registered

My Story

I've benefited so much from the Biospecifics forum that I want to build enthusiasm now around this site. I have also given up on the Biospecifics site due to the spam and will use this site from now on. Please excuse my long story. Fortunately, my job requires travel so I can take full advantage of the resources made available by this group regardless of geography. I hope that by sharing we all can benefit in some way. About 3 years ago (at age 40) I noticed a small nodule on my ring finger that had developed slowly over about 12 months. I brought it to my General Practioner's attention during a routine physical. He told me it was "Viking's Disease" and showed me a medical book with a photo that described it. I didn't think too much of it at time since my family was from Northern Europe and the nodule didn't bother me. He also prescribed a Statin for my cholesterol. I don't know if there was a connection but the nodule seemed to grow quickly into a chord and then into a slight contraction within three months. I then couldn't lay my hand flat on a table. I quit the statins, which my GP didn't think was necessary. It was classic DC from what I could read. I saw a hand specialist who recommended surgery when it had contracted further. Thanks to the forum, I visited Dr. Eaton. In 30 minutes he perforated and snapped the cord and I was mobile the next day with no contraction. I can remember his comment that I had "quite a cord." He also took a look at my foot since I had traveled so far and I had noticed a lump. He told me that the very small lump on the instep of one foot was LD and recommended steroid injections from a foot specialist. I visited a podiatrist who took an X-RAY. He recommended biopsy and taking away a large portion around of the lump at the same time. I also visited a local orthopedic foot specialist, who said that X-Rays will not help since it's a soft tissue problem. He had an Intern who said the cause for some people had a connection to alcoholism. The Doctor gave me the steroid injections. Looking back, avoiding the biopsy was a much better choice. I won't touch my feet until the last possible moment. Both the lump on my foot and DC on my hand have grown slowly but steadily since. It could be a coincidence again, but I remember one period of rapid growth occurred 12 months after visiting Dr. Eaton when I passed a kidney stone and needed IV pain medication. My small nodule on the side of my foot seemed to spread under my foot in just a few weeks, and my pinky finger began to contract. This may go anecdotally to my experience with the statin cholesterol medication and Intern's comment that liver-impacting meds and behavior may contribute to faster growth. I visited Dr. LERMUSIAUX in Paris 14 months after Dr Eaton since my contraction had clearly returned. He performed NA on my ring finger and for the first time on my pinky finger. He also performed NA on my foot.

12/27/06 09:41
from born2run

not registered

12/27/06 09:41
from born2run

not registered

My Story P2

I could not see the cord on my foot but I could feel the breaking of the tension similar to NA on the hand. For those who have gone through NA on the hand, it feels the same, but there's no leverage to snap the cord. I can't say this helped, but it didn't hurt. I could still walk well and run, so perhaps others in worse shape could realize some benefit. He also injected the foot nodules with steroids and recommended Colchinine 1mg per day for 90 days (don't quote the dose on that - get it from a real doctor) for the LD. I followed his advice but again I'm not sure if it helped. Both my LD and DC continue to grow steadily but not contracting or causing big problems, yet. I had the chance to see to Denkler in Larkspur, CA for a consultation. My biggest concern was that one foot nodule is the size of my small pinky finger along the instep and growing under the foot; the other foot has a small nodule in the beginning stages about the size of an acorn. I discussed Radio Therapy with him and he was generally supportive. I have spoken with Dr. Grabenbauer in German and he will probably accept me for the radiotherapy. My sister complained about her foot recently and showed me a nodule that looked exactly like mine from a few years ago. My mom (100% Scandinavian) had complained to her doctor about hand troubles recently and she clearly has cords. I am now taking NAC 1200 Mg twice per day. Dr. Denkler was optimistic about Collagenase being available by 2009. I am too, but I'm more focused on Radiotherapy and NAC. Still under 45, I am pleased to keep my current state. I'm interested to hear about David who had cryotherapy on his feet. Thanks Wolfgang for replying to my email and to Randy and others for the great information. Happy New Year to all. Please keep up the posts.

12/27/06 09:48
Wolfgang

not registered

12/27/06 09:48
Wolfgang

not registered

Re: My Story P1

Welcome born2run and thank you for your story! I haven't heard from David for a while but I am curious, too, about his long term experience with cryo. We keep fingers (and toes) crossed for your NAC trial and please let us know how it worked out. It might take a while, 3 - 6 months or so, to show effect. I think I myself will also embark on NAC for a try.

Wolfgang

01/02/07 19:51
marjorie 
01/02/07 19:51
marjorie 
Re: My Story

Hi Wolfgang,
What is NAC please?
Thanks

01/02/07 20:38
Wolfgang

not registered

01/02/07 20:38
Wolfgang

not registered

NAC

Hi Marjorie, good to have you around!

NAC, or rather N-acetylcysteine (because NAC is also used as abbreviation for a variety of other things), is an antioxidant drug that was originally developed to treat other diseases, mainly chronic lung diseases. It has been in use for decades with usually very little side effects (to my knowledge). It can be administered for a long time, some patients need to take it forever. For more details see e.g. http://www.findarticles.com/p/articles/m..._4/ai_n16083808

Recently it has been found out in lab experiments that NAC also reduces the tumor growth factor TGF beta1, which is important in growing Dupuytren tumors. In 2006 clinical experiments started at University of Erlangen to treat Dupuytren patients (see also our web site under "Other therapies"). Results have not been published yet but seem to be promising. I haven't seen any statistics yet, nor have I heard about what the right dose would be (for other diseases 600 mg/day are common).

If NAC proves effective then it might be a good means to slow down disease progression or even to reduce the size of the nodules or cords. It is too early too tell but I personally believe it might be worth a try because the risk is low and it's cheap.

I copied a post from the BioS forum into this foum, under "Other therapies", because I liked it. Whoever wrote it was ahead of reseach.

Wolfgang

Quote:



Hi Wolfgang,
What is NAC please?
Thanks


01/05/07 18:31
marjorie 
01/05/07 18:31
marjorie 
Re: My Story

Wolfgang,
Thanks for the info about NAC. I have bought some and will give it a try.
It is interesting to note that it is helpful for Asthma sufferers as well as DC.
Marjorie

01/06/07 16:53
Wolfgang

not registered

01/06/07 16:53
Wolfgang

not registered

To Marjorie

Marjorie, NAC won't work instantly because it just reduces the growth rate of new Dupuytren cells. Usually old cells die and new cells grow. If you reduce the rate by which new cells are created the nodule will shrink. But to become noticable a lot of old cells have to die. In short, don't expect it to work within a month, it might take 3 - 6 months before it effects (if it does). But NAC as an antioxidant might do you good anyway, so nothing is lost.

Good luck!
Wolfgang

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cholesterol   Scandinavian   specialist   recommended   Wolfgang   contraction   N-acetylcysteine   consultation   Biospecifics   antioxidant   experience   medication   findarticles   liver-impacting   administered   coincidence   abbreviation   radiotherapy   experiments   injections