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Dupuytren, genes, red wine, frozen shoulders and L-Glutamine
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12/15/18 01:21
isabelle 
12/15/18 01:21
isabelle 
Dupuytren, genes, red wine, frozen shoulders and L-Glutamine

Hi everybody,

I am new to this forum. I am a woman aged 43, with cases of Dupuytren in my family, and a regular drinker of red wine (around 2 glasses a day, i.e. a bit too much given the fact that I am pretty tiny). My story: I noticed in April 2018 a painful lump in my right hand. Because I am bit hypochondriac I showed it right away to my doctor who first thought it was trigger finger. Other lumps appeared and I was soon diagnosed with Dupuytren. Now, 8 months later I have 4 nodules and cords on the right hand and 1 nodule on the left hand, yes, already... I am doing osteopathy and mild stretching. No limitation on fingers mobility so far but I feel some kind o pressure in my right hand. I live in Canada, I am French and was blessed enough to find this forum very early in the process so I knew that I needed to see a doctor performing NA in Paris, which I did last summer.
During the last 18 months, I developed frozen shoulders first on the right side, then on the left side. From october 2018 till April 2018, I took daily 7g of L-Glutamine upon recommendation of a naturopath to treat leaky gut. When I knew I had Dupuytren I read that this supplement somehow promotes the production of collagen. I always wonder if Dupuytren was provoked in my case by genes, too much drinking, L-Glutamine, frozen shoulder or a combination of all of this. Any idea?
In addition, I now fear to develop Ledderhose disease as well, given the rapid progression I see on my hands. I noticed little bumps on my feet but they are totally parallel on both sides, are completely soft and disappear when I flex my feet so I guess it is not fibromatosis and more the natural shape of my feet (at least I hope so). When I try to find the %tage of people having Ledderhose with Dupuytren I find completely different results on the net. Does anybody know if Ledderhose is common in cases like me (relatively early onset of Dupuytren, bilateral, family cases)? Is there any way to avoid Ledderhose (I was contemplating to start cycling and treadmill running or walking at the gym and now I am a bit afraid to create a new problem).
I know from your testimonies that it is very, very important to stay positive about this. I need my hands and high heels for my work so sometimes I worry more than others about the future.
I am looking forward to read your recommendations!
Isabelle

12/15/18 08:37
Stefan_K. 
12/15/18 08:37
Stefan_K. 

Re: Dupuytren, genes, red wine, frozen shoulders and L-Glutamine

Bonjour Isabelle, welcome to the forum.

I am German, living in Paris. I have been through NA here and radiotherapy in Germany. I don't know about some of the conditions you mention but I would get a firm diagnosis for the feet and look into RT (no chance in France though, they don't want to hear about it for DD or LH here, have tried everything). I would also cut down on the wine (did so myself), not for the DD but for general health. Cycling is good, as long as it doesn't cause pain in your feet. Wear cycling gloves, though, in case of an accident.

You mention you saw an NA-specialist, but no contracture. Was it for diagnosis or advice?

Greetings from Paris,

Stef

[56, Dupuytren diagnosis 2006, RH contracture and PNF/NA 2014, radiotherapy RH 2015, LH 2017 & 2018, night splint glove RH since 2015]

12/15/18 10:21
spanishbuddha 

Administrator

12/15/18 10:21
spanishbuddha 

Administrator

Re: Dupuytren, genes, red wine, frozen shoulders and L-Glutamine

Hi Isabelle

I don’t think we can provide you with clear cut answers. Our website provides good information on the disease characteristics https://www.dupuytren-online.info/dupuyt...ontracture.html and the BDS provides a useful list of risk factors https://dupuytrens-society.org.uk/information/risk-factors/.

I usually recommend people start protecting their hands more so than they might have in the past, in the kitchen, doing manual tasks or sport, and I think the same applies to selecting comfortable footwear to avoid undue stress on the feet but continuing where possible things like running or other sports.

You need to find a knowledgable Dr who is aware and supportive of all the treatments, risk factors and related conditions. Possiby you are a candidate for RT if the timing and conditions are right. For most DD becomes just another thing to manage whilst you get on with the rest of your life doing the the things you want to do.

Best wishes SB

12/15/18 12:31
wach 

Administrator

12/15/18 12:31
wach 

Administrator

Re: Dupuytren, genes, red wine, frozen shoulders and L-Glutamine

Hi Isabelle,

Dupuytren's is a genetic disease but triggers might provoke early onset. Smoking is one of them, 2 glasses of wine per day might increase your chance to develop Dupuytren's. From a health point of view reducing to one glass per day would anyway not be a bad idea, wouldn't it? A link between Frozen Shoulder and Dupuytren's might exist, they might have causes in common, but Frozen Shoulder would not trigger Dupuytren's.

You don't need to be concerned about Ledderhose right now. Should you ever develop nodules in the foot (and only very few do) you still can have them treated with radiotherapy. I myself developed two nodules iin my feet, did nothing, and eventually they shrank, don't cause any problems anymore and are even difficult to palpate. Treamill running might not be the best idea to avoid Ledderhose but cycling should be OK.

Taking Glutamine might forster Dupuytren's or Ledderhose, but that's not proven, just suspected. If it helped you I would continue taking it, if it didn't help then no need to continue it. There are other, maybe even better means to put your gut at peace.

Wolfgang

isabelle:
...
During the last 18 months, I developed frozen shoulders first on the right side, then on the left side. From october 2018 till April 2018, I took daily 7g of L-Glutamine upon recommendation of a naturopath to treat leaky gut. When I knew I had Dupuytren I read that this supplement somehow promotes the production of collagen. I always wonder if Dupuytren was provoked in my case by genes, too much drinking, L-Glutamine, frozen shoulder or a combination of all of this. Any idea?
In addition, I now fear to develop Ledderhose disease as well, given the rapid progression I see on my hands. I noticed little bumps on my feet but they are totally parallel on both sides, are completely soft and disappear when I flex my feet so I guess it is not fibromatosis and more the natural shape of my feet (at least I hope so). When I try to find the %tage of people having Ledderhose with Dupuytren I find completely different results on the net. Does anybody know if Ledderhose is common in cases like me (relatively early onset of Dupuytren, bilateral, family cases)? Is there any way to avoid Ledderhose (I was contemplating to start cycling and treadmill running or walking at the gym and now I am a bit afraid to create a new problem).
I know from your testimonies that it is very, very important to stay positive about this. I need my hands and high heels for my work so sometimes I worry more than others about the future.
I am looking forward to read your recommendations!
Isabelle

12/15/18 16:04
isabelle 
12/15/18 16:04
isabelle 
Re: Dupuytren, genes, red wine, frozen shoulders and L-Glutamine

Thank you, all of you!

Yes I recently decreased the wine and I stopped the L-Glutamine since May, just in case. My doctors told me that my wine consumption was not enough to trigger the disease (they say it does for alcoholics, which they say I am not even if 2 drinks is too much, I completely agree) but I suspected it might have because of my tiny frame which does not help the absorption. The positive side of my DD is that it will help me to stay more healthy in that regard.

Thank you for the advice also on NA and RT. Given the potential risks of RT and the fact that I found a good doctor specialized in NA in Paris, I think I will not use RT in Germany as long as I do not have a confirmed problem in the foot.

Thank you also for the recommendation regarding sports. I will stay away from the treadmill then, and focus more on sports like cycling, swimming or pilates.

I is really helpful to get your experience and support.

Isabelle

12/15/18 16:11
isabelle 
12/15/18 16:11
isabelle 
Re: Dupuytren, genes, red wine, frozen shoulders and L-Glutamine

Stef, to answer your question, I saw the NA specialist in Paris to confirm that I had DD and know what to do. She told me to come back when I will not be able to pull one of my fingers up when the hand is flat on a table

12/15/18 17:49
Stefan_K. 
12/15/18 17:49
Stefan_K. 

Re: Dupuytren, genes, red wine, frozen shoulders and L-Glutamine

Hi Isabelle,

was the doctor you saw one of the rheumatologists at Lariboisière, where I had my NA procedure done?

I wonder what she wants to do at that early stage before your finger contracts. Based on my experience since I joined the forum usually one waits for some contracture before doing NA.

Quote:
Given the potential risks of RT and the fact that I found a good doctor specialized in NA in Paris, I think I will not use RT in Germany as long as I do not have a confirmed problem in the foot.
I don't want to talk you into getting RT if you prefer to wait (it's what I did not being aware of the RT option earlier). But based on your description of the rapid evolution, and potential Ledderhose, now would be the time to consider it, perhaps actually for the feet first as that could be where in the long run it inconveniences you most if the diagnosis is confirmed.

Just bear in mind that while NA is excellent in most cases for undoing contractures, it does not stop the formation of nodules and strings. The only proven way to stop progression is RT. The difficulty is to predict if the disease will develop in such a way that it justifies the expense (and time, if you have to travel for it). The risk from the treatment is in my assessment insignificant compared with all the other risks we needlessly take in our daily lives without thinking twice. I keep saying the biggest risk is getting into an accident going to the treatment.

Keeping fingers crossed for you that the bumps your the feet will not be confirmed to be LD and/or go away.

12/15/18 20:17
isabelle 
12/15/18 20:17
isabelle 
Re: Dupuytren, genes, red wine, frozen shoulders and L-Glutamine

Thank you Stephan for your advice,

Yes, I saw one of the rhumatologists of Lariboisière last summer, and she seems to be very knowledgeable. And absolutely, nothing will be done at the moment for my hands, just wait and see.

At the moment, I think I just have the problem in my hands. I carefully examined my feet this morning and I think what I saw was a natural curve when my feet are more pointed, that totally disappear when my feet flex. I will be in Paris in a couple of months and if I have any doubt regarding my feet I will see this specialist again, just to get a diagnosis. From your posts and other posts I read on this forum I know now that Ledderhose can very well coexist with Dupuytren and be even more problematic and even if I am a bit afraid of RT I agree that it would be an option to consider, without delay if a problem is detected in the feet, otherwise it would be too late.

Thank you very much for your concern. It is very helpful to benefit from your experience,

Isabelle

12/15/18 21:03
Stefan_K. 
12/15/18 21:03
Stefan_K. 

Re: Dupuytren, genes, red wine, frozen shoulders and L-Glutamine

You are very welcome, Isabelle.

I am very happy to share what I know, what I believe I know, and what I believe (hopefully making clear which of these it is). Still learning myself, though, and this is why I am trying to understand what is behind the "She told me to come back when I will not be able to pull one of my fingers up when the hand is flat on a table". What would she do or recommend to do, when hyperextension is no longer possible? I have not heard of an NA procedure at this early stage before any contracture, and the only promising course of action at that point I am aware of is RT. But that is not a recommendation you well ever hear from any doctor in France. They are not taught about it, they don't make themselves smart about it, they are not paid for it and they don't want to hear about it, even if you paid for it yourself. But at least they have great NA specialists prepared to treat patients successfully as often as it will become necessary without RT or splinting.

12/16/18 00:49
isabelle 
12/16/18 00:49
isabelle 
Re: Dupuytren, genes, red wine, frozen shoulders and L-Glutamine

Stefan,

This is what she told me : to send her an email when I am no longer able to pull one of my fingers up when the hand is flat on a table. The plan was then to schedule an appointment with her for NA. If I remember well I think she told me that I would not have to book a plane ticket in a hurry when I contact her at that stage and, given the fact that I am in Paris every summer, I may be able to wait and see her at that occasion for NA.

I confirm she does not recommend RT, because of the side effects I think.

Best,

Isabelle

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