Hello everybody,
I would like to know if anybody has any additional information on where to purchase this item? I only found this French company called Pierre Fabre: pierre-fabre.com/en/healthcare-medical-products-contact that sells the stuff but would rather purchase in US.
Hi Henry, I think I need to find out if I can get some Tanganil sent to me here in the UK where I live. I was prescribed some by my GP but in France (I’m half French). If I can’t find a website I might have to ask my brother to sent me some. Here’s another website who seem to ship internationally but from France again https://www.soin-et-nature.com/en/dizziness/9276-tanganil-ge-hypotension-dizziness.htmlx
Sorry not very helpful
Melanie
santa cruz biotechnology. sold as Acetyl-DL-leucine
I searched online ‘is tanganil on prescription in the UK’ and scrolled down to a link from srft.nhs.uk
Tanganil acetyl-DL-leucine 500mg tablets
Usage - To treat patients with ataxia of different aetiologies, including Neiman Pick type C.
Approved March 2016 as proposed indication.
Funding to be sorted ahead of treatment.
FUNDING seems to be key, not all Area Health Authorities may consider funding this medication. Unfortunately we hear of this happening in all sorts of cases, medications on the NHS being refused because of lack of funds.
Ask your Neurologist for advice 
xB
A cheap trial for me.
I’ve purchased a bottle to try. My research indicates there are no known adverse effects from taking this supplement, other than it’s not recommended if you are pregnant. A standard warning for most drugs, I’m pretty sure I’m not pregnant!
I will continue to post updates and results of my trial.
I plan to consult my physician on this (as always)
Henry, I found this link. I think this is an American company,
After a week of trialing these pills, I experience little to no benefit from this product as yet.
I will keep taking them as there doesn’t appear to be any side effects.
Maybe when I wake (if I wake)! tomorrow effects will be noticed.
I have MSA (multiple system atrophy)
Intranet searches revile that it has no benefit for those afflicted with MSA. However, what have I to lose?
Still hoping for a cure not just for MSA but all ataxias.
Hi hutchy-10, I ended up buying a bunch of the stuff (Tanganil) from: https://www.moncoinsante.co.uk/tanganil-ge-acetylleucine-500mg-traitement-des-vertiges-pour-l-adulte-30-comprimes.html. Like you, I felt it as a cheap trial and with no side effects. I’ve been on it for 2 1/2 weeks with no improvements. That goodness it is safe to take!
Enrico, please keep us informed, especially if you realize any results.
Tanganil did not work for me after almost 6 weeks but it was safe to take with no side effects. I have SCA2 and may work for others.
I know this is an older thread, but I also recently purchased Tanangil from France. What I didn’t realize was that the therapeutic dose is 5g/day, for six weeks to reach the benefits - so since the pills come in 500mg you would need to take 10 per day! I thought it was strange how inexpensive they were ($4 per box of 30), thinking only one pill per day was required. Not sure if those who tried it took that many or for that long. They’re working on bringing this to the US which should help make this more accessible.
Hi Robert, like I said it did not work for me after almost 6 weeks and taking 10 pills a day! I went to another Neurologist who is conducting a clinical trial with the main compound in Tanangil. She mentioned to me that it may not have worked because I should have been taking it longer. Her reasoning was because this disease didn’t all of a sudden happen. That it takes a long time, which makes sense but how long must I be on it? She is conducting the pure form of Tanangil and gets the substance only to be used in clinical trials. So it may effect differently then Tanangil. I also order Tanangil from France, finding out later that I needed to order more! Hope this helps
Possibly the best results come from something other than taking it orally. Someone was advocating taking Trehalose orally, but research focused on it being given intravenously.
That is correct! https://clinicaltrials.gov/ct2/show/NCT03759665?term=acetyl-DL-leucine&cntry=US&draw=2&rank=2#contacts
Absolutely…30 pills is hard for anyone to take especially if you’re already on a host of meds. I see the research is being done with IntraBio who’s working on bringing it to the US. Michael Strupp is one of the main researchers from Germany who testified to the Senate last year to bring this to the US. All this off-label or self medicating for symptoms is not ideal so hopefully some progress is made from this.
Hi Robert. I went on it again but this time it was suggested to go longer than the almost 6 weeks I was on originally. What have I got to loss?!?! Will let you know in about 3 months.
Great, will be interesting to hear the results. I contacted the IntraBio researchers and they said if/when it arrives in the US market they are planning to make it into a powder form you take three times a day!
UPDATE ON TANGANIL:
Hello, just wanted to update everyone on this medicine. I competed 84 days = 3 months and there was no change to my Ataxia. Except the usual degradation of balance. I have about 1 more month I can go on this stuff. Since there is no side effect (in future who knows!) I am going to continue and will report if there is any change.
Thanks for updating us Henry.