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anyone else using alpha lipoic acid to help peripheral neuropathy ?

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3908
Joined: Nov 2010

my neuropathy seems to be improving slowly, especially the fingers for which i am very grateful.

had to spend another $50 on a new bottle of ala and just researched again why i am going to the trouble. the link below mentions a trial, the results will be interesting. either way i have already placed a bet on ala helping. maybe it is, but who knows ?

http://health.howstuffworks.com/wellness/natural-medicine/alternative/alpha-lipoic-acid5.htm

has anyone had any improvement in pn, for me its 4 months post chemo.

hugs,
pete

TxKayaker's picture
TxKayaker
Posts: 177
Joined: Jun 2009

I have been taking it for some time now fingers are a lot better but I'm still having issues with my feet.

Mike

abrub's picture
abrub
Posts: 2065
Joined: Mar 2010

I was taking600-800mg/day and it enabled me to walk comfortably again within a few weeks. I'm not taking it any more, but took it for about a year.

lizzydavis's picture
lizzydavis
Posts: 893
Joined: May 2009

Hi Pete,

I am an advocate of ALA! I participated in a clinical trial while on chemo. When I ended chemo, I continued to buy it from Wal-Mart. If I missed a day of taking it, I started feeling the tingling and numbness in my fingers. (I never had any problems with my feet - only in my fingers.) I no longer take it and do not have any problems.

Hugs,
Lizzy

tanstaafl's picture
tanstaafl
Posts: 1292
Joined: Oct 2010

We use common R,S-alpha lipoic acid, with 5-10 mg of biotin, as a part of my wife's support formula, at 1200-1500 mg ALA per day. Stage IV, she hasn't used oxaliplatin since she is doing an immunochemotherapy protocol for stopping new mets and micrometastases, along with the supplements. The lipoic acid prices in the US can be much lower, under $5 per bottle of 300 mg ALA per cap x 120 caps. Shipping overseas isn't too bad either, import duties are a bigger worry.

westie66's picture
westie66
Posts: 642
Joined: Jun 2010

Hi Pete: After the first horrid experience with FOLFOXFIRI (with oxaliplatin), I started taking the following: 5 grams/fermented L-Glutlamine/day, 1 cal/mag pill/day, 1 VIt B6/day, 2 alpha-lipoic acid tablets, one in a.m. one in p.m., both before eating. Plus I had the oncologist reduce the amount and diffusion rate of the oxaliplatin (get it every 2 weeks). I haven't had neuropathy symptoms since then, can even drink cold drinks and eat ice cream. I just finished treatment 6.
Cheryl

Nana b's picture
Nana b
Posts: 3045
Joined: May 2009

Since I have gone back to work, I feel sooooo much better. I must have been a couch potato when I wasn't working! :-)

I'm sure the celebrex I'm taking for my shoulder has a lot to do with it too.

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3908
Joined: Nov 2010

a big thanks for the comments to all. i am so glad many have had good results.

like in my post months ago about leveraging solutions from diabetics as neuropathy is a big issue for t hem and effcts many many more patients.

if we all keep thinking outside the square we may join the tail and we all want to
get onto the last life boat don't we.

we can help each other with care advice, as a group of patients our info flows are fast and effective and debated. this is what edave is all about.

its a great day here, the sunrise is glorious, my wife and kids are asleep in our kingsize bed and i have to get breakfast ready and do lunches. the joys of life.

maybe to hold our kids or a friends hand and actually feel the touch.

hugs,
pete

JerryB6768
Posts: 1
Joined: Aug 2011

Sorry to throw a damper on getting alpha lipoic acid for the cheapest price, but in most cases you get what you pay for. ALA is a poorly soluble powder that doesn't get absorbed very well. The best products are solubilized to give high blood levels. Also, the really cheap stuff is made from ALA powder that is made in China.

westie66's picture
westie66
Posts: 642
Joined: Jun 2010

Thanks! I didn't know that!
Cheryl

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3908
Joined: Nov 2010

great points which is why i pay alot more through a top naturopath but at least i hope the risk of not getting thee benefit of the supplements is minimised.

lesvanb's picture
lesvanb
Posts: 911
Joined: May 2008

I take Alpha Lipoic Acid and R-lipoic acid (sometimes in the same day.
NAC (N-Acetyl Cysteine)
Vit B-6 (3 weeks out of 4)

Leslie

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3908
Joined: Nov 2010

i am on same as you.

here hoping an end to neuropathy

pete

taraHK
Posts: 1961
Joined: Aug 2003

I am trying a new cream. Sorry I can't remember the name of it (chemobrain -- literally! I'm dripping as I type....). But it has cap-something as the main ingredient - which is based on red/chili peppers (as I understand). Sorry I will post again when I have the stuff in my hand! My oncologist recommended it (in the 'you might want to give this a try vein) -- and it is something used by diabetics! (your comment about borrowing, and thinking outside the box). Can 'burn' a litle bit but not in a bad way (for me, so far). Not sure yet how well it works -- I've just started. I couldnt find it in Hong Kong and ended up ordering online - from Australia! (drugs.com, as I recall -- great name -- the package was opened by customs coming into Hong Kong OF COURSE ha ha ha).

Tara

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3908
Joined: Nov 2010

i hope it helps,
your onc sounds helpful, even enlightened.
hugs,
pete

taraHK
Posts: 1961
Joined: Aug 2003

Hey Pete -- found the name of the cream: Zostrix Diabetic Foot Pain Cream. The active ingredient is Capsaicin.

Here's a link -- it's to the company (so could be biased) but does have some info on studies/efficacy:
http://www.zostrix.com/pages/clinical.asp

(I see it can be bought at Walmart/Walgreen etc for our US-based buddies....)

Yea, I'm very lucky with my Onc. We have a long history (8 years) and he is a star in every way --

Hugs!
Tara

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3908
Joined: Nov 2010

its looks helpful if you got pain, my neuropathy ismild and i am going for cure.
hugs,
pete

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