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How many are we?
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10/08/2008 00:11
sblakeslee 
10/08/2008 00:11
sblakeslee 
Re: How many are we?

Quote:



I'm 53. I't really seems to vary person to person. Mine stated as a knuckle pad at around 46. Then nodules in the hand follows by ledderhose. Fist in the right foot and then the left about two years lates. Feet don't really bother me too much so I'meaving it alone. I stated taking the NAC about a year ago and they are less noticible from a feeling stanpoint. I,ve had 1 NA from Dr eaton about 3 years ago on my eft ring finger and it remains straight today.



What dosage NAC do you take?

10/08/2008 12:53
helmet 
10/08/2008 12:53
helmet 
Re: How many are we?

What is NAC?

Kajsa, Sweden

10/08/2008 13:27
sblakeslee 
10/08/2008 13:27
sblakeslee 
Re: How many are we?

Here is what NAC is, as quoted from the Dupuyren Society's website:

N-Acetyl-L-Cysteine (NAC, also marketed under other brand names)
NAC has been in use for decades for treating immune and respiratory deficiencies. To our knowledge it is available in the U.S. as nutritional supplement. Recent research shows that NAC can also slow down or stop growth of Dupuytren tissue: Juergen Kopp et al. "N-Acetyl-L-Cysteine abrogates fibrogenic properties of fibroblasts isolated from Dupuytren's disease by blunting TGF-β signalling" J. Cell. Mol. Med. 10 (2006) pp. 157-165. Abstract and full article: NAC_link.

Above study is a laboratory study on Dupuytren cells, not a clinical study on patients. Yet this study indicates the possibility of NAC "providing a basis for a therapeutic strategy in Dupuytren's disease and other fibroproliferative disorders." Since publication of this study NAC has also been tested on patients. While the total number of patients is still too low for reliable statistics, first results are relatively promising, e.g. to avoid extension of Dupuytren to other areas after surgery or, in one case, a significant reduction of Ledderhose nodules.

Should this turn out a successful therapy it might eventually replace radiotherapy and complement surgery and NA. Long term effects need still to be researched and we would caution taking high dose antioxidants like NAC over a long period of time, like years (see e.g. JAMA_antioxidants ).

As no clinical data have been published yet (and probably won't be published because Juergen Kopp has moved on to another clinic and assignment) Dupuytren Society as an inital assessment collected data from patients who have taken or are taking NAC. For results see NAC data collection by Dupuytren Society.

12/20/2008 21:50
haiyaku 
12/20/2008 21:50
haiyaku 
Re: How many are we?

Thought I'd introduce myself. I'm a 59 y/o female living in Florida. My parents were German and Scottish.

About 6 years ago, I developed a nodule on my r. hand index finger and the finger is now contracted to a near "L." There is a small nodule at the base of the thumb which started about the same time but has not developed further yet. I guess the little finger nodules (3) that started up about 3 years ago took precedence! The little finger cord is now affected.

Last year, I went to a doctor to see what it was, he said and he wanted to operate. I decided to wait to find out more. Good thing I did, as this year, nodules developed in the left hand and in the arches of both feet. So, I've got both Dupuytren's and Ledderhose.....so glad to be here to do some research!




12/20/2008 22:59
newman 
12/20/2008 22:59
newman 

Re: How many are we?

Hi haiyaka. Australia Calling, Welcome to the forum,
Statistics tell us that the little and ring finger are the predominant fingers affected by morbus dupuytrens.
I too ,have had both index as well as the thumbs operated on. It really affects your way of life trying to do any thing manually. I would certainly NOT go down the surgery path. I've had 15 operations including 4 skin grafts. In my case the first surgery which was successful , started the clock ticking for the others. I would have NA on the index and then have radiotherapy on both feet and the affected area on the hands. Radiotherapy worked for me . RT works best in the early stages before contraction on the hand.
I had very strong cords in the feet which required me to wear orthodics. Since the RT I no longer require the orthodics . The cords in the arches have diminished so that in the normal standing position they can not be found . Good lace up shoes with soft inlays certainly help.Have you tried wearing the German made Birkenstock Sandals . Regards.

Edited 12/21/08 01:11

12/20/2008 23:27
haiyaku 
12/20/2008 23:27
haiyaku 
Re: How many are we?

Newman - WOW, you've had more than your share of problems. Thank you ever so much for sharing your experiences with me.

I am not at all leaning toward surgery since this disease has a tendency to recur and I've got multiple occurences that I'd say are aggressive at this time. I'll look into RT. I already wear orthotics.

12/31/2008 16:37
Canuck Lady

not registered

12/31/2008 16:37
Canuck Lady

not registered

Re: How many are we?

I am 53 female. Developed nodules in left palm after wrist surgery at age 51. Developed Lederhosen this past summer at age 52. I am Canadian (Ontario). My ancestry is mostly scottish, 1/4 danish, and 1/8 german.

12/31/2008 17:15
Linda B

not registered

12/31/2008 17:15
Linda B

not registered

Re: How many are we?

Hello Canada..
Welcome to the forum.

I developed Dups in left hand little finger mostly about 10 years ago..I went to Dr. Eaton..He did a good job but the little finger was not released all of the way...It was at about 30 percent after being 90 percent..

My little finger went to 90 percent bent in about a year and a half..
I like Dr. Eaton and have a great respect for him..
I went to Dr. Dinkler in Larkspur, California for the same problems...The little finger is now released to almost 100 percent..
I know I will be going back as this desease progresses..I would go back to either Dr. in a flash..They are both excellent

01/02/2009 19:06
ellenpao 
01/02/2009 19:06
ellenpao 
Re: How many are we?

Ellen here in NJ - 60 year old female. Started with lump in foot in late twenties which surgeon removed. Then DC in right hand (PIP) in early fifties..then left hand (PIP). 6 NA surgeries, and holding. LD in both feet - 2 lumps in left, 3 in right. Strong family history on both sides. Trying to wait patiently for the kenalog injections, but fiqure 50,000 mile adjustments with NA and Dr. Pess here in NJ work fine for now. Leaving the LD lumps alone for now, but sorry winter is here since Reef flip-flops seem to be the best solution for me. Guess I should move to Hawaii!

01/26/2009 16:23
Marisyl 
01/26/2009 16:23
Marisyl 
Re: How many are we?

Hi, I'm a 68 year old woman in the San Francisco (CA) Bay Area. I have small nodules in both feet with occasional pain. I really appreciate this site and forum.
I have read with interest the information on treatment, and as my condition is in early stages, would like to find an experienced radiologist. It gets difficult trying to get referrals sometimes, as MDs can refuse to listen. I have good insurance, due to my husband's job (still working as a software engineer at age 74), and could travel for treatment, but ideally would like to take care of it here. I dread the thought of being unable to walk.
It seems MDs in Germany have the best record of treatment. It is encouraging that radiation can hinder the progress of LD caught early.
My background is mainly Scandinavian.

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nodules   aspirin   Ledderhose   Dupuytren   radiation   fibroproliferative   surgery   N-Acetyl-L-Cysteine   problems   started   treatment   insurance   arthritis   Dupuytrens   Rheumatoid   Germany   developed   thyroid-auto-immune   radiotherapy   disease