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06/22/10 07:10
coachG 
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new guy here
Teacher/coach 46. Teach weight training, coach football & golf. Surgery once & 2 NA procedures on right hand, ring finger now contracted almost 90 degrees. Nodules growing in palm of left hand with 2 other nodules on pinky (which is contracting). Talked with Dr. Kline in Boise about 3rd NA procedure & possible RT. He said RT probably won't do any good on right hand, but may help on left. Also said to give up weight lifting--tough when it's my livelihood.
Looking into other treatments. Will call about Xiaflex treatments, but costs & insurance issues may not pan out. Not sure how much insurance will cover on RT either. NA is pretty good for the price though. Found DCI group in IL & they suggest some topical & non-invasive treatments. DMSO, copper, Vit E & some other things. May see how that works out.
Have been on anti-inflammatory diet for a few weeks now & am waiting to see if it helps. Meat, veggies, some fruit & nuts/seeds. Supplement with lots of fish oil & Vit D. Called Paleo, Primal, Caveman diet. Helping a lot with allergies (inflammatory issue).
Willing to try lots of stuff!
Anyway, thought I'd put my info out there to others & continue reading the forums.
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06/22/10 09:45
wach  Administrator
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Re: new guy here
Be careful about DCI. None of their suggested therapies seems to work. DMSO is a maybe but likely not. Vit E is even dangerous.
Many diets have been suggested but for Dupuytren's nothing seems to be generally successful, irrespective of many individual success stories, see http://www.dupuytren-online.info/dupuytr...s_research.html.
A recent post on our forum referred to the McDougall web site (which is promoting diets) and they write with respect to Dupuytren's: "We are not sure how diet affects this disease. ... It appears to possibly have an increased incidence/connection to diabetes and liver disease among other possible causes. If that is in fact a true connection then there may be some dietary connection as well but again we do not know for sure." And on Vit E: "Please be careful before taking vitamin E as it has been associated with increased MORTALITY. So without good studies supporting this recommendation we would not pursue this."
Wolfgang
Edited 06/22/10 21:30
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06/22/10 21:07
suzukinot registered
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Re: new guy here
hi, how old were you when diagnosed ? i have tried acupuncture has cost loads but not so sure it works. i seem to get bouts of pain in both hands and both feet at same time, am 37 .
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06/23/10 02:03
jimh 
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Re: new guy here
DCI is a scam. The same guy runs other, similar web sites for other diseases, selling similar products.
At this point there are no dietary supplements known to help with DC. Copper, DMSO etc. are promoted for all sorts of conditions, and have no value.
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06/23/10 07:57
coachG
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Re: new guy here
I believe my initial diagnosis (nodules) was in my mid 30s with my first surgery at 39 or 40. I don't really have any pain unless I catch a football wrong & my contracted finger gets banged. Not sure how I'll manage as I get older as my work involves my hands in a very substantial way. You should see me try to throw a football to my receivers...sometimes it just slips out of my hand. My ring finger on my throwing hand is nearing 90 degrees of contracture. Teach weight training, coach football & golf. Even had wrist surgery for something calle DeQuervain's Tenosis (or something like that) that affected my tendons.
As I research more I'm finding that the DCI stuff is pretty much a scam.
I have an appt. in 2 days for a consultation about Xiaflex. My NA doctor in Boise isn't a fan yet & is waiting for more results. Dr. Kline is also a DD sufferer. He's gone through radiation therapy & is doing well. I'm also near an appt. to meet with a radiation oncologist to see about RT as well.
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06/27/10 16:24
dave tnot registered
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Re: new guy here
Hi,
I just had xiaflex treatment (my post is on the forum) and one interesting diference between NA (which I had previously) and Xiaflex is that Xiaflex actually dissolves the nodules, while NA leaves the hard nodules and just cuts enough cords to temporarily release the joint.
It's too early to tell but there is some evidence that Xiaflex slows the disease, perhaps because the nodules are actually dissolved, not left to re-grow as in NA.
Of course, choosing treatment is a personal choice, but so far Xiaflex seems superior to my NA experience. Neither treatment involved much discomfort and the docs I saw for each treatment were top notch. I just think Xiaflex is an improved option. Advice: fight hard with insurance and go to a doc who already is administering xiaflex fo the best chance of success. That may involve travel, but it's worth the effort.
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06/27/10 18:28
LubaM. 
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Re: new guy here
@dave t:
Of course, choosing treatment is a personal choice, but so far Xiaflex seems superior to my NA experience. Neither treatment involved much discomfort and the docs I saw for each treatment were top notch. I just think Xiaflex is an improved option. Advice: fight hard with insurance and go to a doc who already is administering xiaflex fo the best chance of success. That may involve travel, but it's worth the effort.
Good for you...I hope your results are long lasting.
Do you live in the U.S.? Would you be willing to post the name of your doctor?
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06/28/10 20:10
coachG
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Re: new guy here
The Dr. I saw for Xiaflex has only used it once, so I'm not sure I'll use him. I still have NA scheduled with follow up RT for one hand. I may choose to delay Xiaflex for a year or 2 & see how things progress after RT. May sleep with a splint after NA this time, as I hadn't done that before.
Thanks for the feedback!
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