supplements?
 

Do we have a link somewhere here that I've missed with a list of supplements, the doses recommended for pn, and such?

I'm thinking to go back on acetyl-L-carnitine which I'd been taking, but left out this past month. A friend with neuropathy from platinum tells me his doctors recommend carnitine in its prescription form--levo-carnitine, and I'm wondering if I should ask my docs for this. I thought perhaps something was already up here discussing the two types.

Anyoen know?

I posted a copy of the drugs/supplements for PN
 

on Useful websites here. I found my old post on Google.

Carnitine is an old remedy and was originally used by AIDs patients who
typically develop neuropathies with their suppressive drug regimens.

L-carnitine on RX is carnitine fumarate. You can get your insurance to pay for
it that way. But it is also overthe counter by its original manufacturer
Sigma Tau corp...at this site www.epic4health.com

Here is a good reference from the new NIH site:
http://ods.od.nih.gov/factsheets/carnitine.asp

You will need grams I suspect. Rfinney uses or used to use it alot.

I would start at one gram/day and see how that goes.

Depakote, is one drug that depletes carnitine. But not many here use it.
I have a friend who knows of a person who died as a result of carnitine depletion from Depakote. That is pretty rare, but does happen.

Take on an empty stomach. The acetyl version is better absorbed and you can get away with lower doses it you use that. I would take in divided doses, since absorption appears limited for it.

There are some papers on this site as well:
http://www.juvenon.com/product/qa.htm

Here is the PDR monograph:
http://www.pdrhealth.com/drug_info/n...lca_0060.shtml

I posted my old but updated supplement list at http://forums.braintalk2.org/showthr...p?t=177&page=2 . The supplements are in the second part of the three part posting, about 3/4 way down the page.

carnitor-Mrs D
 

Do you see any substantial difference between carnitor and acetyl-L-carnitine? Both use l-carnitine, which is levo-carnitine. My friend was adamant that he is on carnitor for his cis-platinum-induced pn because his doctors told him that the form in the supplements, L-, is not as good as the one by prescription, levo-.

But of course, L- is just short for levo-.

So do you see any other substantial difference?

And I am quite sure Oxford/Medco, the rulers of the universe, would never pay for it. Though I'd try if I could.

I hate to provide a semi-commercial source. But LEF is generally exceptionally good. Maybe you can find some helpful info there.

http://www.lef.org/magazine/mag2006/...rnitine_01.htm

rose

try the Carnitor....
 

It is not so expensive that Medco could squawk.

If they do, then well...your choices are either the same product OTC which
I gave you the link for, or Acetyl version. (acetyl is more expensive)

The acetyl is converted in the body to l-carnitine.

We are not talking megabucks here. There might even be a generic Carnitor now. Carnitor was initally passed by the FDA for primary genetic pediatric use.
But times have changed. Generic Carnitor would be the fumerate variety.

L-carnitine is not as well absorbed from the GI tract. So keep that in mind when deciding on acetyl version OTC.

http://www.epic4health.com/lcar60cap.html
120 caps /month is about $22.00 not a very high price for the same quality as RX. When you go above 1 gram per day, that is where you find $$ issues.

NOW brand acetyl -l- carnitine is also affordable.

LizaJane,

As Mrs. D mentioned, I have now been taking ALC for quite some time. There may be some confusion about all the different forms and name for this supplement. It is my understanding that insurance companies will no longer pay for any capsule form of the supplement because it is available over the counter - this is true whether it is acetyl-l-carnitine or the Carnitor (fumarate version). I know my insurance company told me that - not sure about all the others.

The levocarnitine I hear about in prescription form is intravenous l-carnitine, which is called levocarnitine. I wonder if your friend is taking it that way?

I have stuck to ALC for a couple of reasons. First, the positive studies that have been done have all used, to the best of my knowledge, that form. Second, it appears to be better absorbed from the GI tract. Of course, intravenous l-carnitine would be a whole other matter.

I kept increasing my dosage until I got to 3 grams/day. I took it in 3 doses, on an empty stomach. I felt that there was some initial improvement (symptomatic) but that did not continue. I now have doubts that it ever was effective. I have cut back to 2 grams/day and have not seen any changes. I will likely cut back to 1 gram/day - and down the road, I may even discontinue it for a bit.

It is very clear that ALC has had no effect whatsoever on the course of my illness. I can track the dying back process as the PN spreads further up my legs. However, I have not had significant symptomatic or functional changes during this recent progression.

rfinney

thanks all
 

I had taken a supplement break, which I occasionally do, and when I began feeling unwell last week, thought that, hey, maybe they are actually helping in some specific ways.

I bought the acetyl-L-carnitine that I've always taken.

I'm not sure if they help or not, but I do know that as soon as I stop my nails all start breaking!

Right now my main issue is dealing with pain which is presumably from the back surgery earlier in the year, but which is more in my left butt/hip than back. I'm wondering if it's not bursitis or something more focal.

But I'm back on program.