Potential Trials and Medication

[gpduffy]

Hello everyone

We have been offered tudca as part of Tricals.

However with placebo, we are considering purchasing:

1. Tudca
2. Sodium phenylbutryrate (to form amx0035)
3. Possibly L-Serine

Has anyone tried these treatments.
Many thanks for your advice

[Ellie]

gpduffy Welcome to the forum.

Just to clarify: are you participating in the Tudca trial or shunning it because of the risk of getting the placebo, so will do your own DIY Tudca trial?

[Gordan1111]

Hello I've taken Tudca but not Sodium phenylbutryrate. Not tried to measure any possible slowing of symptoms - just helps me feel at least doing something!

[BobFOwen]

Hello, I've requested that I be put forward for a place in the Stoke cohort, but I live near Leicester, which may be considered remote. In the meantime, I've bought some capsules; I take one in the morning and evening together with my Riluzole tablets. The TUDCA capsules are 500mg strength, but the study states that 4 x 250mg will be issued twice a day. To match that, I would have to take two capsules twice a day, but they measure 20mm by 7mm diameter, which is a bit on the big size.

[matthew55]

Get a PEG makes meds alot easier 😀x

[gpduffy]

Thank you - debating whether or not to take part in a Tulca trial when the medication is readily available.

Is anyone taking sodium phenylbutryrate?

[EvelynMW]

Interesting, have not even heard of this trial. I was considered for a gene directed trial but cannot remember the name! Got rejected anyway - for a good reason, my diseas is progressing too slowly! Not at all like me mum, who had rapid progression.

[Gordan1111]

Hi Evelyn - Google amx0035 - can buy Tudca but sodium phenylbutryrate more costly and difficult - and only possibly slows progression a bit - I think

[Ellie]

Sodium phenylbutyrate is available from this reputable supplier at an eye watering price: https://thesocialmedwork.com/ammonap...phenylbutyrate

Google it and you can undoubtedly find it cheaper but do your homework on suppliers. x

[BobFOwen]

It may not be a cure, but Guanabenz (Wytensin) combined with riluzole is said to slow down the progress of the decease. Wytensin tablets are available, but I don't know where you could buy them; probably just in the US for a high price.

[gpduffy]

Where can you buy Guanabenz (Wytensin) in the UK please?

[Ellie]

gpduffy Good luck in finding a pharma company in the UK who will sell direct...

Don't suppose you own horses 😏

[meffordh]

It is interesting to see all the drugs that are and have been tried. My father has been taking RCH4 for well over three and a half years and it has slowed his decline by 95%. compared to before he started on it (I have studied his ALS scores and this is correct). No side effects. The charity that gives it to us have always provided constant support, professional advice and charge nothing. There is an information site run by pals who take it. Hope this helps.

[Graham]

That is interesting meffordh. What type of MND does your father have?

I assume that he is on a trial?

What is his current ALSFRS-4 score?

Thanks for sharing this.

[Graham]

Meffordh, it would give more credibility to your report if you could answer my questions. A few of us have survived 15+ years without any treatment.