Tudca?

[Mtzu]

I'm wondering if anyone here has heard of taking Tudca to help slow progression. It was mentioned to me by someone who works with Augie's Quest. She told me that she heard about it from one of the people working at ALS TDI. I've asked for additional information.

This is a link to a study I found where it was used to treat ALS patients.

 

[Nikki J]

New to me. But I know some PALS believe there is a liver disease component to ALS thanks for sharing

 

[lgelb]

Several people on the TDI forum tried it. There's a lot of info there.

 

[Mtzu]

Igelb, Thanks for letting me know. I'll see if I can get on that forum and learn more.

 

[Nikki J]

Thanks again Michael. I was going to ask my neuro at next visit but then I found this Aggregation-prone c9FTD/ALS poly(GA) RAN-translated proteins cause neurotoxicity by inducing ER stress
And ordered. This is preclinical work but it looks like there may be benefit in c9

 

[BlueandGold]

Can you share the appropriate dosage? Is it 1g twice daily as mentioned in the study? Do you know if the capsules can be broken and mixed in liquids?

 

[Nikki J]

You can get in powder form at the big online store. I have not found any other dosing regimen. That said I am going to start lower and see how I tolerate it. It is not cheap either! Are you taking other supplements Vince?

 

[BlueandGold]

Only magnesium and b12.

 

[Mtzu]

The person that told me about it said the TDI person suggested that one start with a lower dose and work up to avoid GI issues. I sent her an email asking if she can find out what amounts are recommended. When I searched for sources on the internet I found extracts (which sometimes is concentrated) and raw available. I asked her to see if she can get clarification on which might be better. I'm sure it will take a few days to hear back. When I do I'll update about the dose and anything they are willing to share.

I find it interesting that there isn't any info on ALS Untangled. They communicate via twitter. I sent them a tweet asking about Tudca. I'll let you know if I hear from them too.

Nikki, Thanks for sharing that study. Looks very interesting.

Fingers crossed (well, somewhat on my left hand at least ).

-Michael

 

[Mtzu]

Untangled got back to me. They do have some info. It's mentioned in their review#25 Ursodiol. It appears that Ursodiol, also referred to as UDCA, is similar to TUDCA. They mention TUDCA in the section about animal studies. Not a lot of info here. I'm still waiting to hear back about what TDI recommends.

-Michael