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 😏