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'Causes'
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09/01/10 16:25
polo 
09/01/10 16:25
polo 
Re: 'Causes'

wach:
I mailed the password for user polo to the email address stored for polo. Please check your mail, including spam.
I'm in, thanks!

09/02/10 16:27
PhilipHa1 
09/02/10 16:27
PhilipHa1 
Vitamin E and other peoples experience

wach:
Philip,

RT isn't preventive, is only good for treating already existing Dupuytren's sites. If you are susceptible for Dupuytren's disease it can start new anywhere at any time and RT can't prevent this. That's actually one of the reasons why you shouldn't radiate areas with no Dupuytren's: you might need to radiate that sometimes later.

Trauma: I had very aggressive growth of new Dupuytren's nodules after Dupuytren's surgery and those new nodules appeared outside the operated area, i.e. it was not recurrence after surgery but extension of the disease and it started within about 4-6 weeks. I also experienced mild activation of my Dupuytren's after a thyroid surgery.

Vitamin E: there is little to no evidence that Vitamin E helps against Dupuytren's. Some time ago it was believed it does but that's no longer so. You might also have a look at http://www.dupuytren-online.info/dupuytren_anecdotal.html.

Wolfgang
PhilipHa1:
...
In addition, despite having successful RT treatment 10 years ago I occasionally get symptoms of active DD - aching and itchy hands and feet. These appear to correlate strongly with injuries elsewhere, most commonly pain from my knees (torn menisci) i.e. as a result of causing damage to my knees, something in my body triggers a mending process which as a side effect triggers the symptoms of active DD. ...

...
I would be interested if any other forum readers have had experience with trauma elsewhere in their bodies triggering DD ‘activity’ (the itchy/creeping/aching) in hands or feet?

As an aside I have been using Vitamin E tablets (800 ui/day) to suppress the DD symptoms when they are triggered - I was recommended taking Vitamin E for 3 months following RT treatment in Munich. I think the theory is that Vitamin E’s antioxidant properties suppress free radicals and thus suppress DD activity. I am aware that although this has been discussed scientifically nothing has been proven. I would be interested if my personal experience strikes a resonance with anyone else on the forum?

Wolfgang,

I am not convinced by the papers you referenced on the website, they appear contradictory. The King paper is very old, possibly uses impure forms of vitamin E and reports side effects not reported in the other 2 papers. The other 2 papers disagree over side effects, particularly mortaility. Clearly my personal experience, a sample of 1 person is not conclusive either!

The point I was trying to make is that I feel vitamin E may for me reduce the itchy/creeping feeling associated with active DD, and wondered whether anyone else had the same experience? Fortunately or unfortunately I have had only a handful of experiences of 'active DD' since having RT 10 years ago, so I cannot prove that taking Vitamin E caused the symptoms to stop. I am also not expressing the opinion that Vitamin E stops progression, just alleviates some of the symptoms (itchy/creeping feeling). I don't take vitamins normally and stop taking vitamin E once the symptoms disappear.

In addition, like 'stillcantgegister' I was also interested in anyone else who had experienced trauma elsewhere in their bodies triggering DD activity? So little of these 'experiences' are reported scientifically, I can understand that someone's 'feelings' doesn't make good science, but find this forum very useful in understanding other patients experiences.


Philip

09/02/10 19:45
LubaM. 
09/02/10 19:45
LubaM. 
Re: 'Causes'

[
In addition, like 'stillcantgegister' I was also interested in anyone else who had experienced trauma elsewhere in their bodies triggering DD activity? So little of these 'experiences' are reported scientifically, I can understand that someone's 'feelings' doesn't make good science, but find this forum very useful in understanding other patients experiences.


Philip
Re: Trauma triggering DD activity....

Interesting point. It is so hard for me to try to recall the sequence of events of the various trauma experiences I've had in the past ten years or so....I wish I had kept a calendar of events but back then I didn't know that I would be an active "posting" member of this forum needing dates to compare my experiences with those of others.

I know for a fact that my DD started about ten years ago (maybe 1998...give or take a few years? truly don't remember). It began (after I had a bad fall on my right hand and a broken finger) with nodules in my right palm and small finger began to contract at PIP joint. Several hand surgeons told me to wait until the contracture is severe to do surgery...they were all totally against other procedures (RT and NA)...I wish I had done something sooner.

First NA on right small finger in July 2006...Miniscus repair on right knee Nov. 2008...Shoulder rotator cuff surgery April 2009....RT for "other" hand and foot (for my LD) Nov. 2009....and repeat NA on same right small finger March 2010.

So in answer to your question, Philip, have the traumas (knee and shoulder surgeries) elsewhere in my body triggered DD activity? who knows...I say probably. I wish we (the patients on this forum) could get all our information together and compare notes in an easy manner.

09/03/10 12:48
wach 

Administrator

09/03/10 12:48
wach 

Administrator

Vitamin E

Philip, if you don't believe it it's difficult to argue ... the JAMA paper is fairly recent and a generally accepted review of the literature. It addresses a variety of antioxidants, therefore it might differ from the other paper. It concludes "Treatment with ... vitamin E may increase mortality". If the effect of Vitamin E is not proven and the mortality increase is not very low I would personally be reluctant to take it over a long period of time.

Wolfgang

Edited 09/03/10 12:49

05/29/13 16:57
Helena 
05/29/13 16:57
Helena 
Re: 'Causes'

Hi stillcan'tregister,
(I hope you did manage to register in the end)
As you mention, you have the hereditary predisposition and then there's something that triggers the onset of the disease (heavy manual work, climbing, hard impact in your palm, broken radius...). If nothing happens before you get old, then age triggers it, something might happen when aging that awakes it too :)
This is a very late answer but I hope you still get to read it


@stillcan'tregister:
My understanding is that D is a hereditary disease. I know my grandfather had it in his hand, and now I have it. And to my knowledge you can't really do anything to "cause" it unless you already have the hereditary predisposition. Open to correction here, please.

But having the hereditary disposition can something you do spark it?

Here's my thinking; I use my hands a lot. I windsurf, a sport in which you are basically hanging on to a 1-1/4" dia bar for dear life, much the same hand action as water skiing. I also do a lot of manual labor with power tools. So I never thought twice about the 'callouses' I had developed until a doctor noted they were D.

But last July (09) I broke both wrists and had to have surgery to insert plates. And now I have cords. Is there something about surgery that can exacerbate the progression of the disease?

06/05/13 07:46
stephenp 
06/05/13 07:46
stephenp 
Re: 'Causes'

I have found that this paper provides an interesting easy to read summary of the clinical associations of DD

M G Hart and G Hooper; Clinical Associations of Dupuytren's Disease: Postgrad Med J 2005;81:425-428

I am happy to email this to anyone who cannot get access to it.

In the latest episode that I have had, A big nodule a cord rapidly developed in my right hand. This was associated with increased aching in my left hand and feet. I have no clinical signs in my feet and have had RT on the left hand about 18 months ago. About one week after the first set of RT on my right hand the aching has gone from both hands and my feet. For me there are clearly some systemic inflammatory mediators.

06/06/13 14:19
pixi 
06/06/13 14:19
pixi 
Re: 'Causes'

My mother developed DD and LD in her 50s. No other family history as far as we're aware, and my mother's side of the family is Cuban, Spanish, and French. Of course, the vikings did get around...

I saw the first node on my foot when I was 29 and training for the marathon, shortly after I moved from NY to London. Then I developed a knuckle pad about four years later when I joined a rowing crew. I went to a hand specialist (in London) who diagnosed the DD and said that perhaps my move and climate change had triggered it.

My own hunch -- and I've seen this on the forum years ago -- is that my early onset is due to the fact that I took two courses of Accutane in my early 20s.

06/08/13 00:17
ellensmum 
06/08/13 00:17
ellensmum 
Re: 'Causes'

I would say (and this is my opinion) Dups/Ledderhose is genetic majoritory of the times causing a predisposition to the disease - if trauma occurs at an earlier age then it triggers the disease.
My experience is my daughter who at around 18 months old caught her foot on a carpet gripper causing a pf to occur. She is now 9 years old & is showing knucke pad which has started up since she has started playing netball.

My family particularly is littered with sufferers - my grandmother was one of 10 sibings 8 of which also had problems either in their feet or hands at the time of death - their children mostly seem ok - with the exception of one sister who had 3 children all of whom have problems, and so do their children.

Zoe

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