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new guy here
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06/22/2010 04:10
coachG 
06/22/2010 04:10
coachG 
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.

06/22/2010 06:45
wach 

Administrator

06/22/2010 06:45
wach 

Administrator

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

06/22/2010 18:07
suzuki

not registered

06/22/2010 18:07
suzuki

not registered

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 .

06/22/2010 23:03
jimh 
06/22/2010 23:03
jimh 
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.

06/23/2010 04:57
coachG 
06/23/2010 04:57
coachG 
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.

06/27/2010 13:24
dave t

not registered

06/27/2010 13:24
dave t

not registered

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.

06/27/2010 15:28
LubaM. 
06/27/2010 15:28
LubaM. 
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?

06/28/2010 17:10
coachG 
06/28/2010 17:10
coachG 
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!

03/25/2014 12:00
Motobandit2204 
03/25/2014 12:00
Motobandit2204 
Re: new guy here

wach:
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

Hi I would second Wolfgang comments
I've got the medium pack from DCI just to give it ago, following the tablets religiously , nothing happening
More over I emailed them asking them questions and asking questions to Dr Herzy who is meant to respond and I never got a reply email.
Ou can buy all the products online that dci are offering for a fraction of the price; go to amazon

I'm 33 now; have dc in both hands ; left started at 28 and just have one nodule on left hand ring finger no contraction yet
Right hand started jan this year and has been really aggressive in growth across both ring and index finger nodules starting to form


I'm trying a 10 percent verapamil ointment shortly made at a local compounding chemist; heard this might be able to normalise the cellular structure of dupuytrens by using calcium channel blockers and preventing the fibroblast building up

Also looking at radiation treatment; we have a doctor in Adelaide Australia who is treating people

Any feedback on radiation for early dupuytrens and it's success let me know
Has anyone tried verapamil?

The other thing I have read is regards to cAMP production; some things we eat reduce cAMP and increase; this helps create more ability to normalise cellular activity ; a study done on rats suggests it could be a good future treatment; affecting cAMP production

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