Tudca

[alexph]

Hi everyone. Those of you taking TUDCA independently (not on a trial), where are you getting it?

I've been getting it from BodyBio where it's £58.99 for 60 500mg pills. I've been taking the recommended dose of 2 per day but just discovered on ALSUntangled that the trial dosage was 1g twice a day. So I am going to double my dose (and the cost 😢).

Just interested in what others are doing and if there are any significantly cheaper options.

[Ellie]

Can't you get on the clinical trial alexph ?

[alexph]

I've been told trials of AMX0035 and antiretrovirals are happening soon but when I ask I never get given an actual timeline. I've chased the research nurse about it today so hopefully I'll get more info soon. I recently tested negative for SOD1 and C9orf72 and I think they were waiting for those before considering which trials for me to go on.

I did also register for MND-SMART at St George's but never heard from them since.

[LindaB]

"I did also register for MND-SMART at St George's but never heard from them since. "

I'm still waiting too😏

[Ellie]

alexph I really hope you get on a trial soon 🤞🤞 xx

[keno]

i started on the tudca trial a month ago
no idea whether placebo or not