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A-L-C STUDY GROUP
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01/11/06 01:18
SusieQ 
01/11/06 01:18
SusieQ 
A-L-C STUDY GROUP

Last summer there was a post on this message board from someone who had a history of aggressive Dupuytrens symptoms. After N.A. he started taking both Colchicine and Acetyl-L-Carnitine and he saw dramatic improvement. He wondered if this was the result of one or both of the above, but, since effective, he would continue with both.

I became curious and did enough research into A-L-C to feel it was appropriate to give it a try, by itself.

At that time I encouraged others on this board to try it to, at whatever level they chose. Those who signed on right away have had six months now to monitor results. A few people also signed on at later dates.

Here are my own results. After I post this I'll notify others on the list to post their results as well!

*********
How long have you had Dupuytrens disease and how aggressive has it been in the past?

- I first noticed a node in my palm in January of 2005. Shortly afterward two more nodes appeared, all in a row, all relatively small, with no pain but sometimes a tight or pinching sensation.

Have you had previous surgery or N.A. for Dups (if so, how often and results)?

No.

Do you have a family history of Dups that you know of?

Just recently I talked to my older brother who says he also started noticing a lump in his right palm a few years ago, which has given him no particular trouble so far. Neither of us (nor my sister) know of any history in our family.

Approximately when did you begin taking A-l-C?

Mid-August 2005

What dosage level?

500mg. each morning.

How long did you continue to take it? Did you change dosage levels during this time?

I discontinued it in Mid-December. I found that I was not comfortable (or couldn't keep track very well) taking too many supplements at once, so had dropped another one, which I then substitited back in (for eye health).

Have you been trying any other therapies or drugs during this time that you feel might be affecting your Dups disease?

No.

What (if any) changes have you noted in your condition during the time you have been taking A-l-C?:

The nodes have not gotten larger but I note a subtle elongation with what appear to be cords which do not run to the fingers but down toward my lower palm.
******

01/11/06 01:33
Steve

not registered

01/11/06 01:33
Steve

not registered

Original Poster

Thanks for coordinating this!

How long have you had Dupuytrens disease and how aggressive has it been in the past?

- Nodule Dec 2003, contraction May 2004...ache in hands and feet that make it unpleasant to walk in past.

Have you had previous surgery or N.A. for Dups (if so, how often and results)?

- Yes, NA June 2004 and again in August 2004 after quick recurrance of contraction.

Do you have a family history of Dups that you know of?

- Yes, father and his cousin.

Approximately when did you begin taking A-l-C?

-Sep 2004

What dosage level?

- 1000mg morning and night

How long did you continue to take it? Did you change dosage levels during this time?

- Still continue taking it with no side effects noted

Have you been trying any other therapies or drugs during this time that you feel might be affecting your Dups disease?

- Yes, colchicine .6mg twice a day which I reduced in April 2005 with detection of elevated liver enzymes. Did go through a "withdrawl" period for a week following this change to once a day as my feet and hands ached quite a bit that week.

What (if any) changes have you noted in your condition during the time you have been taking A-l-C?:

- No progression of contraction. Possible growth in cords but it could be my imagination too. No problems walking now and no major aches in the hands.

01/12/06 01:16
Mike Nystrom

not registered

01/12/06 01:16
Mike Nystrom

not registered

my results with ALC and Glucosamine Chondroitin

I will stick to the format by answering the following questions but will include a more detailed account following the questions.

How long have you had Dupuytren’s disease and how aggressive has it been in the past?

- I got my first lump in the palm of my left hand around mid 2004. By August 2005 I had 3 lumps in my left palm and 3 in my right palm. No contractions.

Have you had previous surgery or N.A. for Dups (if so, how often and results)?

- No.

Do you have a family history of Dups that you know of?

I am half Danish. My Danish grandparents both died young and my mother never got Dups. But I have distant relatives in Denmark and some in this country that have Dups.

Approximately when did you begin taking A-l-C?

- August 2005

What dosage level?

- 1000mg. each morning.

How long did you continue to take it? Did you change dosage levels during this time?

- I have been taking 1000mg every morning. I started out trying to take 1000mg at night but kept forgetting to take them. I seem to have good results only taking 1000mg in the morning.

Have you been trying any other therapies or drugs during this time that you feel might be affecting your Dups disease?

- I quit taking Glucosamine Chondroitin April 15, 2005. I believe Glucosamine Chondroitin aggravates my Dups.

What (if any) changes have you noted in your condition during the time you have been taking A-l-C?:

- See Case History below

Case History of a 58 year old male as of Jan 2006

My name is Mike Nystrom

In the early 1980s I started having problems with my right knee. I was playing volleyball, racquetball and wallyball once a week. I had to give up volleyball and wallyball because the jumping eventually caused my right knee joint to ache before completing a single game. My knee used to make a clicking sound when walking down the hall at work. Eventually I had to give up racquetball also. It progressed to the point where my knee would get sore if I walked down a hill while pulling my golf bag in a pull cart.

I don’t remember when, maybe 6 to 10 years ago or even earlier, I started taking Glucosamine Chondroitin and over time (a few months) it really worked. The click went away and I could even walk the golf course while carrying my bag with no pain. I took one double strength pill every morning (500mg Glucosamine, 400mg Chondroitin).

About 3 years ago I developed small hard nodules about 1/8” in diameter under my right nipple. They were not visible but they hurt if you pressed on them. They bothered me enough that I had them surgically removed and they have not returned.

In the middle of 2004, I developed a small lump in the middle of my left palm and it was diagnosed as Dupuytren’s Disease. By April 15, 2005, I had 3 bumps in the palm of my left hand and 1 large one (size of a dime) in the palm of my right hand. I also started to developed nodules under my left nipple. So I decided to go off the Glucosamine Chondroitin.

In August of 2005 I visited my surgeon because I was considering having the nodules under my left nipple removed. I showed her the lumps in my hands (I had 3 in each palm by then) and asked if they could be related at all to the lumps in my breast. She thought not. I eventually decided to skip the operation and live with my lumps. It seemed like the progression had slowed way down possibly due to going off of the G/C back in April????

After leaving the surgeons office I decided to give Acetyl-L-Carnitine a try. I started taking two 500mg capsules every morning. I also planned to take two at night but kept forgetting. I buy my A-L-C from GNC. I’ve been taking A-L-C for six months now and here are my results:

1. In six months the lumps in my hands have not gotten any worse (result of going off G/C ????). They also “seem” to be smaller/softer.
2. The lumps in my hands are not nearly as painful/sensitive as they used to be since taking A-L-C
3. As of two weeks ago the lumps under my left nipple have disappeared!!!!
4. I tried a different brand of A-L-C from Bronson versus GNC. It has 500mg of A-L-C plus 200mg of Alpha Lipoic Acid. I wasn’t after the Alpha Lipoic Acid but was searching for a cheaper way to get A-L-C (GNC product is $35 for qty 60 pills). Within a week the lumps started to hurt again.
5. I switched back to GNC product and the pain went away.
6. I decided to try going back on G/C along with taking A-L-C. In less than a week the lumps became painful so I went back off the G/C and the pain/sensitivity went away.

My Unscientific Conclusions:
- For me… G/C accelerates Dups and for sure it causes the lumps to be sore and very sensitive.
- For me… two 500mg capsules of A-L-C from GNC taken every morning significantly reduces the pain and sensitivity of the lumps in the palm of my hands and possibly stopped the progression of my Dups (it could have stopped due to going off the G/C).
- For me… two 500mg capsules of A-L-C from GNC taken every morning appears to have caused the painful lumps under my left nipple to disappear.

01/23/06 01:05
Linda 
01/23/06 01:05
Linda 
My Results of A-1-C Study

How long have you had Dupuytrens disease and how aggressive has it been in the past?

"I noticed two small nodules in my palm while playing tennis about Feb ’05, and was shortly thereafter diagnosed with Dups. The nodules approximately doubled in size over the next few months. I am female, age 61, of Ukrainian ancestry, with no known history of Dups in my family. In November ’05, I was diagnosed with Carpal Tunnel Syndrome. My doctor (who has been treating me for Dups and Carpal Tunnel) said that he has seen many patients that had both Dups and Carpal Tunnel but knows of no direct correlation between the two."

Have you had previous surgery or N.A. for Dups (if so, how often and results)?

"I have not had N.A. or surgery"

Do you have a family history of Dups that you know of? "No"

Approximately when did you begin taking A-l-C? "8/3/05"

What dosage level? "1000 mg per day"

How long did you continue to take it? Did you change dosage levels during this time?

"I have not changed dosage levels, and am still taking it."

Have you been trying any other therapies or drugs during this time that you feel might be affecting your Dups disease?

"I started cold laser therapy 11/29/05, and on my doctor’s advice began daily exercise of my hand by massaging the cords from my palm towards my fingers. I was taking Vit C supplements for many years but discontinued taking them the beginning of May ’05. I also had been taking glucosamine with Condroitin for a couple of years, which I also discontinued taking about May ‘05."

What (if any) changes have you noted in your condition during the time you have been taking A-l-C?

"My nodules have almost disappeared, but I have no way of knowing whether that was due to the cold laser treatment, exercise, and/or A-1-C."

01/23/06 01:57
Steve

not registered

01/23/06 01:57
Steve

not registered

cold laser

Linda could you post in another topic what exactly cold laser therapy is? Thanks

01/26/06 01:31
Kristen 
01/26/06 01:31
Kristen 
A-L-C results (or not)

(Sorry - this post was mistakenly posted to the laser topic a few days ago. Kristen)

How long have you had Dupuytrens disease and how aggressive has it been in the past?

"Knuckle pads on both ring fingers between 1988 (age 35) and 1992. Chronic problem for years, then went away after a couple rounds of cortisone. Lump in right palm appeared in 2000, ring finger curled within six months. At the same time, left pinky began to thicken and curl - no lumps in palm. Extremely aggressive since 2000."

Have you had previous surgery or N.A. for Dups (if so, how often and results)?

"I started going to France for NA in 2001. I have had it performed 8 times now, generally about every six months. I have been to Lermusiaux, Badois, Lellouche, Eaton and Zidel. I gave up on the pinky about 2 years ago because NA didn't work due to a frozen PIP joint. I have OS scheduled for Feb. 23rd. I'm not happy about it, but it is curled almost back to my palm. It's this or amputate the little beast."


Do you have a family history of Dups that you know of? "No - though I know little of my father's family due to early divorce. I'm French, German, English, Irish with ancestry on both sides loaded with diabetics and alcoholics - though no one in my family currently has either affliction"

Approximately when did you begin taking A-l-C? "
"Early 2005"

What dosage level? "500 mg. morning and night"

How long did you continue to take it? Did you change dosage levels during this time? "6 months on 1000 per day"

Have you been trying any other therapies or drugs during this time that you feel might be affecting your Dups disease? "No - I take no drugs at all - just a multivitamin and calcium pills."

What (if any) changes have you noted in your condition during the time you have been taking A-l-C?
"Zip, nada, zilch - it recurred within 6 months as it always had.
I'm also a colchicine and allopurinol failure. So far, nothing seems to slow it down. Sorry I don't have anything positive to report - on the up side, the A-L-C produced no side effects, positive or negative."

01/26/06 01:12
SusieQ 
01/26/06 01:12
SusieQ 
Karen's study results

Hi all,

Karen G. sent her study results directly to me before I started this topic. Since she hasn't sent them here, I take the liberty of presenting them via "cut 'n paste".

**************
Results of taking Acetyl-l-Carnitine

Here are some questions to consider:

How long have you had Dupuytrens disease and how aggressive has it been in
the past?

Probably first noticed it about 1999. The first few yrs were not very agressive - the last few yrs have been quite agressive.

Have you had previous surgery or N.A. for Dups (if so, how often and results)?

Had one lump, the size of a large pea, removed from my small finger, left hand. Even tho the lump was sizable there was never any pain or irratation.! p; The surgery left a portion of the finger numb and the surgery site very tender. The lump immediately began to grow again. My advice is to NOT have surgery unless you absolutely have to!

Do you have a family history of Dups that you know of?

Seems my brother had lumps in the palm as I do.

Approximately when did you begin taking A-l-C?

August of 2005 maybe.

What dosage level? 500 mgs, once a day.

How long did you continue to take it? Did you change dosage levels during this time?

Still taking it.

Have you been trying any other therapies or drugs during this time that you feel might be affecting your Dups disease?

Along with the A-l-C I take 100 mgs of Lipoic Acid and 60 mgs of Co- Enzyme Q-10. I began this particular therapy as a result of reading the small print on one of the bottles of A-l-C. It stated that the A-l-C would be better utilized by the body if Lipoic Acid and Co Q-10 were taken in conjunction with the A-l-C.


What (if any) changes have you noted in your condition during the time you have been taking A-l-C?


My hands feel softer, not as stiff as before. Also, the progression seems to have slowed considerably.

01/27/06 01:23
Steve

not registered

01/27/06 01:23
Steve

not registered

4 of 6 seeing OK results

not bad results so far from our "study"...drugs don't work for everyone the same way as some people are genetically predisposed and others aren't, etc. Hopefully we can do this again in 6 months and see what's happened or if others have started taking it after seeing these results.

Steve

01/31/06 01:02
Pablo

not registered

01/31/06 01:02
Pablo

not registered

ALC survey results

52 year old male of English/German ancestry. Thanks, Susan for getting and keeping this going. This is a long term battle and when we're dealing with mostly anecdotal evidence on a disease that seems to start and stop for unknown reasons, long term tracking is needed to tell what works and what doesn't.

How long have you had Dupuytrens disease and how aggressive has it been in the past?
Ledderhose in feet starting at about age 16. Surgery in left foot 1985, rapid recurrence. Now 2" diameter x 1/2' to 3/4" thick lumps in both feet.

DC in both hands, starting with knuckle pads at about age 21, lumps in right palm about age 28, lumps in left palm and contracture starting in in right hand about age 42 (1995).
MIP Contracture to 45 degrees in 5 years, treated with NA 12-01.
Then recurrence mainly in PIP to 45 degrees in 2 years, treated with NA 11-03.
Then recurrence in same PIP , stable 1st year, then to 30 degrees in 6 months. Perhaps it's slowed now, seems so but time will tell.

Have you had previous surgery or N.A. for Dups (if so, how often and results)?
NA Paris 12-01, MIP contracture released from 45 degrees to 10 degrees. I did not use a night splint, I think it would have been near zero if I had. Took Dr. B 10 minutes to cut major but well defined cords.
NA Florida 11-03, MIP released from 10 degrees to zero, PIP contracture released from 35-40 degrees to 10-15 degrees. Used night splint- that was effective in getting the maximum straightening. Took Dr. E 45 minutes to sever thick and diffuse cords. PIP could not be fully released due to the broad, diffuse nature of the growth ( nothing clear to cut).

Do you have a family history of Dups that you know of?
My mom has a couple of small lumps in one palm, about the way mine started. They showed up when she was 75, so she says she got it from me. Hers are stable and not growing significantly.

Approximately when did you begin taking A-l-C?
8-05

What dosage level?
250 mg once daily

How long did you continue to take it? Did you change dosage levels during this time?
In Jan '06 changed to 500 mg/day, in 2 doses as 500mg at once bothers my stomach sometimes. Still taking this dose.

Have you been trying any other therapies or drugs during this time that you feel might be affecting your Dups disease?
Also started colchicine, 0.6 mg/day at same time, 8-05. Would like to keep them seperate for science's sake, but am trying anything reasonable right now to slow the progression.

What (if any) changes have you noted in your condition during the time you have been taking A-l-C?
The contracture of my right hand PIP seems to be stopped or slowed at 30-40 degrees (measures different on different days).
The severed cords in my palm that cause MIP contracture seem to be growing slightly, but have not reconnected.
My other lumps seem stable but some small ones in my feet are sometimes sore. That's a bad sign, as from my experience tenderness = growth.
Some arthritic pain in my right thumb seems worse. My doc says it's definately not the colchicine, but I don't know if the ALC could be causing this- Anyone else noticed anything like this? maybe I'm just showing my age.

02/04/06 01:27
Don 
02/04/06 01:27
Don 
Potaba

Has anyone one this for DC? Dr. Andrew Weil recommeded it. Says doctors are not awre of it.

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Glucosamine   contracture   Colchicine   started   condition   progression   morning   Approximately   affecting   continue   therapies   disease   aggressive   working-mechanism   Acetyl-L-Carnitine   surgery   Dupuytrens   Chondroitin   history   results