| Advice re: what not to do |
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07/04/2016 16:35
yogageeky 
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07/04/2016 16:35
yogageeky
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Advice re: what not to do
I'm still new to this & have 1000 questions, though I'll limit it to one large one. What should be avoided? I'd been taking Vit C, Vit E, Vit D, multiple vitamin, Fish Oil, estradiol, potassium & also clonazepam (as a sleep aid a couple nights a week). After reading articles here & there, I've stopped the C, D & clonazepam. I've added turmeric & magnesium tab + oil.
I also have used Retin-A and Vitamin C creams for years, as well as other supposed collagen-inducing face creams. I'm concerned that these might be undesirable in terms of Dupuytren's. Is there a school of thought on these kinds of things? If so, I'd appreciate your thoughts, or links in that direction. Thank you.
Rochelle
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07/04/2016 16:41
staxman 
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07/04/2016 16:41
staxman
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Re: Advice re: what not to do
Yeah, and what about beer/wine?
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07/04/2016 16:52
Stefan_K. 
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07/04/2016 16:52
Stefan_K.
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Re: Advice re: what not to do
yogageeky:
I'm still new to this & have 1000 questions, though I'll limit it to one large one. What should be avoided? I'd been taking Vit C, Vit E, Vit D, multiple vitamin, Fish Oil, estradiol, potassium & also clonazepam (as a sleep aid a couple nights a week). After reading articles here & there, I've stopped the C, D & clonazepam. I've added turmeric & magnesium tab + oil.
I also have used Retin-A and Vitamin C creams for years, as well as other supposed collagen-inducing face creams. I'm concerned that these might be undesirable in terms of Dupuytren's. Is there a school of thought on these kinds of things? If so, I'd appreciate your thoughts, or links in that direction. Thank you.
Rochelle
Hi Rochelle, welcome. In my view to be AVOIDED:
- worry too much about a condition which can be managed and won't kill you
- waste your time and money on things which are unlikely to impact your disease
- stop doing the things you enjoy doing and make your life miserable when without this it would be impacted little
- listen to doctors who want to wait until fingers bend and then perform open surgery
- excessive strain on your hands and any bleeding injuries
What I would DO INSTEAD is
- monitor and document the evolution and make yourself smart here about treatment options, notably radio therapy and NA
- see competent medical professionals in these fields to determine when treatment makes sense
- come back with questions when you have read the excellent articles on this site, specifiying the condition of your hands and your age
Stef
[54 year-old male, DD diagnosis 2006, RH contracture and NA/PNF 2014, RT 2015, wearing night splint glove]
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07/04/2016 17:03
yogageeky
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07/04/2016 17:03
yogageeky
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Re: Advice re: what not to do
staxman:
Yeah, and what about beer/wine?
Yes, a glass of red wine each evening. No beer.
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07/04/2016 17:13
yogageeky
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07/04/2016 17:13
yogageeky
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Re: Advice re: what not to do
Stefan_K.:
- come back with questions when you have read the excellent articles on this site, specifiying the condition of your hands and your age
Stef
[54 year-old male, DD diagnosis 2006, RH contracture and NA/PNF 2014, RT 2015, wearing night splint glove]
Sorry not to provide pedigree. Recent diagnosis though symptoms for 4+ years. 63 yrs of age. 25 degree PIP joint in left index finger. 20 degrees MP in pinky & ring finger of right hand & 10 degrees MP of middle finger right hand.
I have read so many complete articles & studies as well as abstracts I can not possibly recount them for you. Thanks for answering my question.
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07/04/2016 18:13
staxman
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07/04/2016 18:13
staxman
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Re: Advice re: what not to do
Why yes to wine/no to beer?
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07/04/2016 18:16
wach  Administrator
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07/04/2016 18:16
wach Administrator
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Re: Advice re: what not to do
Are you smoking or did you previously smoke for a while? Smoking seems to cause an earlier onset.
Besides that, I personally would support the suggestions by Stefan, mainly don't let Dupuytren's spoil your life (it's not curable but at the same time it's a minor disease), look into NA (needle fasciotomy) or - if you prefer injections - into Xiaflex to get your fingers straight again, and maybe stop taking nutrional additives. They cost money, are often not healthy http://jama.jamanetwork.com/article.aspx?articleid=205797 and at least don't help with Dupuytren's http://dupuytrens.org/DupPDFs/1949_King.pdf .
Wolfgang
yogageeky:
staxman:
Yeah, and what about beer/wine?
Yes, a glass of red wine each evening. No beer.
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07/04/2016 18:23
staxman
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07/04/2016 18:23
staxman
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Re: Advice re: what not to do
I caused confusion with my question. Is it ok to have beer or wine?
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07/04/2016 19:05
Stefan_K.
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07/04/2016 19:05
Stefan_K.
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Re: Advice re: what not to do
yogageeky:
... Recent diagnosis though symptoms for 4+ years. 63 yrs of age. 25 degree PIP joint in left index finger. 20 degrees MP in pinky & ring finger of right hand & 10 degrees MP of middle finger right hand.
I have read so many complete articles & studies as well as abstracts I can not possibly recount them for you. Thanks for answering my question.
That helps refine the advice. So you are not all that new to the disease. I'm not a doctor, but as a fellow patient who has studied options for the past two years I would look into NA (or collagenase) on the fingers that bother me to straighten them, with night splinting and possibly followed by radiotherapy to prevent severed cords from reconnecting and pulling on the fingers again and halt progression on any other smaller and developing cords.
Stef
[54 year-old male, DD diagnosis 2006, RH contracture and NA/PNF 2014, RT 2015, wearing night splint glove]
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07/04/2016 19:13
yogageeky
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07/04/2016 19:13
yogageeky
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Re: Advice re: what not to do
wach:
Are you smoking or did you previously smoke for a while? Smoking seems to cause an earlier onset.
Besides that, I personally would support the suggestions by Stefan, mainly don't let Dupuytren's spoil your life (it's not curable but at the same time it's a minor disease), look into NA (needle fasciotomy) or - if you prefer injections - into Xiaflex to get your fingers straight again, and maybe stop taking nutrional additives. They cost money, are often not healthy http://jama.jamanetwork.com/article.aspx?articleid=205797 and at least don't help with Dupuytren's http://dupuytrens.org/DupPDFs/1949_King.pdf .
Wolfgang
Thank you for the article links, Wolfgang. As to the smoking, yes I did smoke from the age of 15 to 30. So there's that :( Certainly not doing so now. And I don't want to do anything to further the situation. On the other hand, I like the advice to not let it control everything about my life. I'm afraid it's already affected something major & that is the amount and style of yoga I've been doing for the past 5 years. Lots of handstands, lots of hand balances, not to mention all the down dogs. I practice 10 hours a week or more. I'm working on modifying poses, but that is disheartening and a daunting task. I'm just trying to get my bearings. Thanks for your help.
Rochelle
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