Hello,
Wondering whether anyone can help please.
I am a Cystinuria patient, and am looking at taking Alpha Lipoic Acid tablets to prevent stone formation. I have gathered that R type Alpha Lipoic Acid is the one to use.
My question is: what dosage of this R type will be sufficient to prevent the stone formation? Is there a preferred supplier/manufacturer?
Thank you, your help is appreciated.
Hi, I take 600mg at night. I used to take it in the morning but found it upset my stomach a little. Currently using 'Doctors Best' and 'Natrol' When I use up my supply I'm going to try Natrol slow release capsules instead.
Hi ThisWayUp,
Thanks for your reply.
Do you also take other medications, e.g. Penicillamine, or do you rely only on the ALA?
I have been taking Penicillamine 500mg for many years but want to come off it, due to the serious side-effects that it causes. So, I have just bought R-Lipoic Acid (by Geronova Research) which is claimed to be more effective than the general Alpha Lipoic Acid.
As you may already know that the general Alpha Lipoic Acid is made up of 50% R-Lipoic and 50% S-Lipoic. It is the R-type that “does the job”, and the S-type has no function other than increasing the volume. So, to reduce the amount of my dosage and to avoid taking additional stuff that has no function into my body I decided to take the R-Lipoic Acid.
From your useful reply, saying that you take 600mg of ALA, I plan to take the equivalent 300mg of R-Lipoic Acid. However, I intend to involve my Consultant Nephrologist in keeping a close watch on my condition when stopping Penicillamine.
Regards.
Thanks Man013, I had some vague knowledge of the S & R Lipoic Acid differences but didn't appreciate their function. I will search for the Geronova supplement.Re: Penicillamine. I tried it but I couldn't handle it. Made me very lethargic and I had some numbness so I figured the benefits couldn't be justified compared to diet, hydration and exercise.
Hopefully ALA is that extra thing that helps long term.
The biggest thing I noticed with Cystinuria is the level you have to be 'self aware' of how you feel relative to cystine precipitation (as much as you can gauge it without constant 24hr urine tests)
The need for hydration and frequent urination is distracting and exhausting and a source of sometimes cruel 'amusement' by those who see it as an exaggerated condition.
Self employment helps me manage resting when I'm unwell but that comes with its own economic pitfalls.
I'm always aware there are others worse off, notably children who have been diagnosed at a young age and have endured years of invasive procedures
No fun for them😬
I hope ALA provides some benefit to you and you can reduce you Penicillamine dose
All the best
I’m wondering if you can provide an update on whether you’ve noticed any difference after starting alpha-lipoic acid?
With regard to L- vs R- versions — I don’t see anywhere that it’s been shown which of these enantiomers has the effect in Cystinuria. The only reported case study in humans used Natrol brand, which I don’t see is R or L selected.
Hi tailsca, you're right about very little research is being done. As you said the only reported case study is the one using the Natrol ALA, but I recommend that you have a look at the information regarding R-Lipoic Acid on thee Geronova Research website.
I have spoken to my consultant nephrologist, and he advised that I should not stop talking Penicillamine until there is firm conclusions from the research being carried out on Alpha lipoic acid This is because I suffer from a sever cystinuria condition, and it would be too risky to stop.
Best wishes.
Hello, I am the mother of a boy with cystinuria, diagnosed at 20 months.After that horrible episode, when he was only 2 years old, he spent nearly 12 years with some stone but without causing any discomfort, it's been 5 years since we've been going to the emergency room with horrible stones and 2 surgeries.
I have hope in ALA
Hi Sugab1421,Sorry to hear about your son. I have suffered from cystinuria for many years, and my advice is take care of his kidneys and make sure that their function does not deteriorate. Keep in close contact with your consultant physician.
Diet, urine PH, some medications will help.
Let me know if you want any other information.
Best wishes.
