Possible help!: Hi all, Has anybody tried... - Ataxia UK

Ataxia UK

4,033 members4,571 posts

Possible help!

Jacqui-A profile image
6 Replies

Hi all,

Has anybody tried Taltirelin OD tablets, according to the website, they are supposed to treat Ataxia.

Any feedback would be great.

Stay safe

Jacqui

Written by
Jacqui-A profile image
Jacqui-A
To view profiles and participate in discussions please or .
6 Replies
wobblybee profile image
wobblybee

🙂 As you can see there has been a clinical trial, but it doesn’t look completed.

ClinicalTrials.gov Identifier: NCT04107740Recruitment Status : Recruiting

First Posted : September 27, 2019

Last Update Posted : October 2, 2019

See Contacts and Locations

Jacqui-A profile image
Jacqui-A in reply to wobblybee

Thank you for your reply wobblybee, I didn’t realise there were clinical trials going on

wobblybee profile image
wobblybee in reply to Jacqui-A

🙂 Yes Jacqui, there are a number of trials re ataxia. You can log onto clinicaltrials.gov and search for ataxia to see what’s happening.

sonofapeter profile image
sonofapeter

Hi Jacqui-A. I've been taking Taltirelin now for about 1 year. As everything I've tried, it starts out amazing, but then tapers off. I am unsure if it's more of a placebo effect? But I do know, every time I think about stopping taking it(its rather expensive), I stay off of it for about a day and definitely feel a lot more disorientated so I jump back on it quickly. But it has definitely not stopped my progression. Maybe. slowed it down? It would be nice to have someone smarter than me measuring this, but I always been concerned about it becoming unavailable so I don't tell too many people. If you can afford it, I'd say at least try it? :)

bio-japan.net/taltirelin-OD...

Best.

Jacqui-A profile image
Jacqui-A in reply to sonofapeter

Thank you for your reply, nice to hear from someone who has been on it, yes it is rather expensive but if it works!!

sonofapeter profile image
sonofapeter in reply to Jacqui-A

Unsure if it truly works, but as we don't have any other solutions, I would say if you can afford it, it wouldn't hurt to try it, right? :)

Best.

You may also like...

Signs of a possible cure for MS

It has had amazing effects on most of the patients, even though the sample size was small. Has...

Query on possible Cognitive regression SCA 19/ 22

of her SCA and has always got a bit stuck on an idea, but I wondered if anyone else has noticed,...

How to help my husband?

don't want to speak about his feelings with anybody. I'm trying to keep myself positive but it's...

Tiredness- Help needed.

are feeling so wet. I need some advice if anyone has any for me? I need help...

Help re medical retirement

retirement. I would most grateful if anyone with any experience of ill health retirement can give...