Tudca - information and benefits (Aus)

[Loulou22]

Hello brains trust!

I have recently come across some talk of Tudca and potential benefits. I feel like my progression is having more of an impact on me lately so I’m looking into anything that can help. Riluzole is the only approved therapy here in Australia so options are limited!
(I have just had screening for Triumec which my neuro offered as an off label script.)

Is Tudca only available of benefit with other drugs? I’ve read a little but it’s confusing. I’ve also read (from a guy who claims to have reversed MND) that it should be taken in combination with apple cider vinegar?

Any information would be greatly appreciated

 

[Nikki J]

Tudca is a component of relyvrio and the two drugs are felt to be synergistic. However there was an old trial of tudca alone that showed some benefit and a larger trial is wrapping up in Europe.

I took tudca before relyvrio came out, tried relyvrio and could not tolerate it and went back on tudca. I also take riluzole. I had a long plateau after starting tudca but was also taking metformin for my c9. I stopped metformin and have progressed somewhat. That said, I think tudca probably helps me. My neurologist said she has a patient who improved on it. Not sure where the apple cider vinegar fits in.

 

[Loulou22]

Thank you Nikki. How much do you take?

 

[Nikki J]

2000 is the amount my neuro recommended. You need to titrate up. Start with 250 and add 250 every week or two is what they said. End up 1000 twice a day but while working up do it three times a day for the middle phase

 

[steve613]

We were taking compounded relyvrio prior to its approval but started a study drug, apilimod, which interacts with sodium phenyl butyrate, so we had to drip the compound. We take TUDCA 1000 mg twice daily as does Nikki

 

[monique92760]

Nikki, Can I ask what facet of Relyvrio bothered you? I almost quit it because it was pretty much making me gag 1/3 of the way in as I was trying to swallow the full 8oz at one time. (Who drinks it gradually over an hour? Yuck) I found a MUCH better way to get it down. But even still, I only do one dose a day and was wondering if the Tudca could potentially be a second kind of dose? Any opinion on the matter?

 

[rao]

tudca taste foul, even though peg it still makes me feel sick lol

 

[Nikki J]

I could tolerate the taste monique. I had severe vomiting and diarrhea. Although supposedly the gi symptoms improve after a few weeks there was no way I could do it

If you have tried every trick ( mouthwash ,rinses , strong tasting food after) and absolutely can’t do twice a day you could ask your neuro about trying 1000 of tudca for the second dose. You should be aware that amazon tudca is not medical grade like in relyvrio. Also that the supposed synergistic effect of the two parts of relyvrio would be lost. On the other hand we are expecting results soon from the European tudca study which might give insight into how much different relyvrio is in effect

 

[Statius@]

I had severe diarrhea with relyvrio so stopped and went back to Tudca which I get on Amazon. Nikki, is there any OTC source for the medical grade you mentioned?

Ed

 

[monique92760]

Thank you for answering. I have managed to find an easier way to take Relyvrio and was going to share it with you as i did with my ALS team at the specialty pharmacy. That said, I only manage one dose in the morning. I have started taking the Tudca 1000mg in the evening as a second "dose".

 

[Nikki J]

Ed it is not otc but with a prescription from your doctor you can get it from everyone dot org. They are based in Europe and specialize in getting drugs to people who live in places where they aren’t approved. They used to have a different name but it is the same organization. They will help with the import paperwork if needed.

It is called tudcabil and comes in 250 mg. They are capsules and a little smaller than the otc Amazon kind. It is a little more than one Euro per capsule and then there were some additional charges. I believe they are legitimate and it worked when I did it but I didn’t see a difference to keep paying that much. However, as you know, I am progressing very slowly so maybe someone faster than I would notice a difference. I know several pals who used them for tudcabil or other meds. No one complained that I know of but of course do your due diligence

 

[smarinkov]

We were taking compounded relyvrio prior to its approval but started a study drug, apilimod, which interacts with sodium phenyl butyrate, so we had to drip the compound. We take TUDCA 1000 mg twice daily as does Nikki

Steve, can you share your experience with the study drug apilimod?

 

[steve613]

It was a 24 week study followed by open label extended acces. When my wife went off study drug due to an administrative halt, she immediately felt worse. We were able to resume the expanded access several weeks later. My wife was one of about 10 subjects in this phase 2 study. Dr. Babu at MGH says the company is planning a phase 2b/3 study perhaps second quarter this year. Nothing published yet but the compound does appear in the csf and surrogate markers went the right way. Because of her experience we chose to stay on apilimod (and forgo relyvrio, since there is a strong theoretical interaction with sodium phenylbutyrate) and she takes TUDCA instead.