[gardengirl]

Acetyl-l carnitine for peripheral neuropathy

by gardengirl on Mon Oct 20, 2014 3:17 pm

Hi All.

I have heard that taking acetyl-l carnitine 500 mg helps with peripheral neuropathy from Velcade. Any experiences or thoughts on this?

Thank you!

[Beacon Staff]

Re: Acetyl-l carnitine for peripheral neuropathy

by Beacon Staff on Mon Oct 20, 2014 5:05 pm

Hi GardenGirl,

Beacon Medical Advisor Dr. Ken Shain has recommended acetl-l carnitine in at least two separate postings about supplements that myeloma patients may want to consider to help with peripheral neuropathy. See, for example, this posting he made in June of 2012.

Acetyl-l carnitine is also a supplement that Dr. Paul Richardson of Dana-Farber has recom­mended to Beacon readers in the past. See this posting with information he provided the Beacon in 2010.

Just as a quick reference for anyone who is interested, this link will take you to most of the peripheral neuropathy-related postings here in the forum.

If anyone has experiences with acetyl-l carnitine for peripheral neuropathy, don't hesitate to share them with GardenGirl here.

[gardengirl]

Re: Acetyl-l carnitine for peripheral neuropathy

by gardengirl on Tue Oct 21, 2014 9:50 am

Thank you so much, Beacon Staff! Now to research other supplements that may benefit (my doctors never came forward with any recommendations – I am learning about this via friends, websites and The Beacon!)

[mikeb]

Re: Acetyl-l carnitine for peripheral neuropathy

by mikeb on Tue Oct 21, 2014 4:28 pm

Hi gardengirl,

At my medical team's recommendation, I take acetyl-l carnitine, alpha lipoic acid, and vitamin B100 complex as supplements for peripheral neuropathy. I also take the prescription med, Lyrica [pregabalin], for it.

I think the Lyrica makes the most difference in managing the peripheral neuropathy, but it is difficult to tell what does what since I have taken all the supplements continuously since around the time that I first got Velcade in January, 2013. I started taking the Lyrica around May, 2013 after starting to get some weird pin-like stabbing pains in my feet. That went away and has mostly stayed away after I started the Lyrica.

I also massage my feet with coconut oil each night, and that may be helping a little. Just recently I stopped cocoa butter cream and changed to coconut oil at the suggestion of one of my nurses.

Good luck to you!

Mike