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01/17/2005 23:18
Steve

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01/17/2005 23:18
Steve

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update

After my quick progression this year to 45 degrees and 2 NA surgeries on the same cord, I previously reported that taking colchicine .6 twice a day and 2g of acetyl-l-carnitine has apparently helped. The progression of my aggressive form of DD stopped with a 20 degree contracture rebound after my second NA procedure about the same time as I started on these medications. Dr. Eaton prescribed the colchicine and I found a study that said ALC helped in Peyronies Disease which is related so I tried it as well. Not sure if one or the other is responsible since I started both at the same time. But in any event, I've had no further contracture in the past 4 months now. And to put it in perspective, in the prior 4 months I had gone from nodule to 45 degrees to 0 degrees after NA #1 to 45 degrees to 0 degrees after NA #2 to 20 degrees. Maybe the disease has stopped on its own but there is no way I'm going to stop taking these drugs and find that out. No side effects are apparent from taking them too. If you actually read up on ALC, it sort of makes sense why it might help as it provides a substance that you lack as the body ages - and DD comes on later in life...who knows. Has anyone else tried this yet???

01/17/2005 23:25
observer

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01/17/2005 23:25
observer

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Where do you get it

Dear Steve,

Thank you for the post.

You said Dr Eaton prescribed this - do the items your are taking require a script or are they over-the-counter? If they are over the counter - please provide dose and name of manufacturer for those who are interested in considering it.

observer

01/17/2005 23:54
observer

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01/17/2005 23:54
observer

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Question re colchicine & acetyl-l-carnitine

d'oh. Sorry Steve - you have provided the dose.

01/17/2005 23:20
Karen 
01/17/2005 23:20
Karen 
Question re colchicine & acetyl-l-carnitine

Hi - So glad to see your info posted re this disease. My questions are in re the colchicine and the acetyl-l-carnitine. Are these vitamins? Are they prescription? If vitamins I'll rush out to get them. My dupuytrens has been diagnosed but is not far enough along to seek surgery yet - I am considering acupuncture to see if it will help. I have numerous nodules in the palm and can feel the bands advancing towards several fingers. I'm also beginning to feel some discomfort in the hand which means to me that it is advancing. Obviously I am looking to stop or prolong the advancement.
I would appreciate any insight. Thanks!!

01/19/2005 23:52
Steve

not registered

01/19/2005 23:52
Steve

not registered

follow up

Colchicine is a prescription that is normally used for gout...its been around for a long time. Acetyl-L-Carnitine is a nutritional supplement you can buy at good vitamin stores - I use Twinlab or Source Naturals 500mg. I take 2 in the morning before breakfast and 2 before dinner.

I started both at the same time so I don't know if one or both are helping. But the disease progression stopped and aches in my hands and feet stopped shortly thereafter...I have even stopped taking Celebrex which I needed for the aches. Even though I only have one hand fully impacted, the other has cords that formed and the feet had plantar fascitis diagnosed. Both are fine at the moment.

If you take the Acetyl-L-Carnitine by itself, I'd be interested to see if that alone can make a difference for you. I'd love to only take one or the other but won't stop either for fear of the disease resuming its progression which was so aggressive for myself.

01/20/2005 23:30
Steve

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01/20/2005 23:30
Steve

not registered

source

This is the article that prompted me to try ALC if anyone wants to see it for themselves...Peyronies has similar biochemistry to Dupuytren so its not a far leap to think one treatment could apply to both diseases.

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=11446848&dopt=Abstract

01/26/2005 23:30
Steve

not registered

01/26/2005 23:30
Steve

not registered

seriously, does nobody else care about this?

I had the most aggressive progression of the disease Dr Eatons seen where he had to operate on me twice over the summer on the same cord and nobody seems to care that after taking these two drugs/supplements the disease has stopped dead in its tracks for 4 months and I have much less aches and pains from it??? unbelievable...

01/26/2005 23:57
observer

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01/26/2005 23:57
observer

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Transdermal Verapimil

Hi Steve,

Actually, I have been discussing it with my significant other. Sometimes it takes people a while to diggest things.

Herbal suppliments, etc can be quite frightening to some because there is so much out there that is simply hokus pokus.

Chin up Steve, we are listening.

01/26/2005 23:11
Ed

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01/26/2005 23:11
Ed

not registered

Transdermal Verapimil

One week ago I started appyling verapimil cream and it seems to be working. I have a fairly large lump in my plam and the cord hasn't gottn bad enough as I can still put my palm flat. The lump has gottne smaller after 1 week and I will continue to apply it twice a day. I'm thinking I might want to try your solution but it might muddy the "experiment".

Ed

01/26/2005 23:40
Steve

not registered

01/26/2005 23:40
Steve

not registered

Jim...

Keep up with that verapamil and then maybe layer this on later because you are right to try and see which product might be helping. I haven't seen regression of the disease like you are suggesting you may be seeing, my case has just been a stop in the progression.

If someone does try these things and isn't desparate like I was for something to stop its progression, I'd try the Acetyl first and see if you have any further progression or lessening of aches in the hands/feet. Then try the colchicine if your doctor or Dr. Eaton prescribe it for you. It probably is one of the drugs and not both that is working but I'm not about to find out which one works by stopping possibly the wrong one. There are a lot of brands of Acetyl-l-carnitine out there but the big thing I do is take a large dose. 500mg x 2 pills before breakfast and also 2 more at dinner. From what I've read up on the web it doesn't appear to have side effects or toxicities at large doses. But if anyone finds things please post them here. Good luck!

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uids=6796445&dopt=Abstract   interested   dupuytrens-a-new-theory   health-marketplace   Glucose   cmd=Retrieve&db=PubMed&list   interesting   aetyl-l-carnitine   results   progression   Insulin   over-the-counter   AcetylLCarnitine   AlphaLipoicAcid   started   Disease   uids=11446848&dopt=Abstract   contracture   acetyl-l-carnitine   colchicine