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.
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)
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.
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
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.
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!
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.