Alpha Lipoic Acid (ala): Has anyone tried... - Cystinuria Support

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Alpha Lipoic Acid (ala)

English7 profile image
5 Replies

Has anyone tried Alpha Lipoic Acid (ALa) supplement. There is a trial going on in California with it. Just wondering if anyone has tried it.

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English7 profile image
English7
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5 Replies
gsweeneyICF profile image
gsweeneyICF

I know of several patients that have added the supplement to their daily routine but none have reported any difference (yet). Dr. Stoller is the one overseeing the study. The study required patients be taken off of all medication in order to participate. I do know of one person in the study who found out he was given the supplement vs. the placibo and he just had surgery ..so I'm not sure the results are even close to being in. Will it hurt your kidneys if you take, no, but why add something you don't need without the results you would want.

ThisWayUp profile image
ThisWayUp

I’ve started trying it since you posted. There are studies in mice in 2014 which were favourable. It doesn’t have any real side effects and is inexpensive.

I don’t tolerate Penicillamine well and Thiola isn’t subsidised in NZ so it would cost approx $30k for a years supply at the lowest dose.

I’ll take another 24hr urine test in a month and see if it is affecting my cystine levels

MattBultitude profile image
MattBultitudeAdministrator

From a medical point-of-view we don't know if this works which is why there is a big study in the US looking at this. So we haven't recommended anyone take this until the results of the study are published. I think need to be careful of anecdotal cases (e.g. one patient felt better; one patient needed surgery) as can be very misleading. We are obviously really looking forward to finding out what the study will show.

Hmm, very interesting. I will be curious to see what the study shows.

I found this from 2010 pubmed.ncbi.nlm.nih.gov/211...

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