Amylyx

[Samkl]

I'm progressing very slowly so I didn't notice anything one way or another. I believe TUDCA is very safe and does protect the liver. That's why I switched to Milk Thistle. It has similar properties and, when you take most drugs, the liver needs support. Milk Thistle has also been known to cause stomach upset but I tolerate it well as long as I take it with food.

I have very bad acid reflux and gastritis. Stopping TUDCA was a quality of life measure. I was still walking a couple of miles a day when I stopped. I'm pretty sure I took it in 2016 but for a very short period of time.

Are you taking the milk thistle JUST for liver support? And if you were able to manage the acid reflux with pantaprazole or something similar would you elect to go back on the TUDCA for any neuroprotective value?

 

[Nikki J]

My neurologist thinks it is worth it. She recommends 2 grams a day divided does. Started with 500 a day and work up. This is the dose in the original small study. I was never able to take more than 500 twice a day due to to gi issues

 

[Samkl]

Thanks Nikki. I’m sorry about that, and would have thought there might be some way for the gi to be managed for you, if your neuro thinks the TUDCA could be beneficial.
My brother is waiting to hear if he is in the copper Cu atsm trial but thinks there is doubt due to his EGFR levels (a kidney function thing) not being quite high enough. He isn’t on Riluzole as the muck around with respirology meant there weren’t 4 weeks prior to the start of the trial to establish a stable dose.
I’m starting to wonder whether he should go on TUDCA regardless. Is anyone who can be on itwelladvised to do so? Btw, HIS neuro, the respirologist and a couple of others have all said they don’t think Riluzole is worth going on because it’s not a game changer and many people have an adverse reaction to it. He needs to have faith in his treatment team, so I don’t want to spread doubt, but I was surprised by that.

 

[Nikki J]

taking tudca may well be a trial exclusion. The usual rule is anything experimental and tudca is in trial now.

Many people tolerate riluzole just fine - my sister did and I do. Not a game changer but supposed to slow progression by 10 percent. If you are fasting progressing then it won’t make much difference. If you are very slow progressing it could matter much more. I have a friend who is 12 years out still doing well and on riluzole 10 percent of 12 years ( and counting) is over a year!

 

[Samkl]

I read somewhere that the 10% figure comes from 4 studies, one of which had a cohort of over 75 year olds with diagnoses of greater than 5 years, which would I suppose have skewed the longevity benefit down.

 

[Berdyna]

My neurologist thinks it is worth it. She recommends 3 grams a day divided does. Started with 500 a day and work up. This is the dose in the original small study. I was never able to take more than 500 twice a day due to to gi issues

Dear Nikki, could you please let me know how can I order or were do I buy TUDCA. I would like my brother to try. Many thanks!

 

[Nikki J]

I buy mine from Amazon. However I think you are in Europe? I know you can buy it on the UK site. Not sure where else. I would look to see if there are supplement stores either brick and mortar or online. Non ALS people take it too

 

[Tedstehr]

Could someone interpret what " significant" means? When Edaravone results were published they said it slowed progression by 30% on average. Although somewhat meaningless in evaluating personal progression it still gave me something I could sink my teeth into. If they said significant and the delay was 10%, it is very different than say 60%. Thank you all!

 

[Nikki J]

They said it was statistically significant. The full results are not yet published. I wouldn’t be surprised if they are presented at one of the spring conferences

 

[Samkl]

I buy mine from Amazon. However I think you are in Europe? I know you can buy it on the UK site. Not sure where else. I would look to see if there are supplement stores either brick and mortar or online. Non ALS people take it too

Nikki, what brand do you get? I’m finding it hard to wrap my head around being able to get something on Amazon that has an impact on ALS！

 

[Nikki J]

I had to switch a couple of time due to availability. Currently it is Nutricost. I liked the olympus brand when that was available just because the label made me laugh “ turns men into demi gods”

 

[Nikki J]

Yes I go to Mass General Home of the Healey ALS Center.

steve, you state your interest is other. May I ask what that means?

 

[Berdyna]

I buy mine from Amazon. However I think you are in Europe? I know you can buy it on the UK site. Not sure where else. I would look to see if there are supplement stores either brick and mortar or online. Non ALS people take it too

Many thanks Nikki for your reply. Yes we are in Europe I will check in Amazon. Many thanks!

 

[Samkl]

My brother met the criteria and has been enrolled in the CUatsm trial. In the end his EGFR levels were ok, but his CK levels were borderline. I know he can’t use anything else being investigated, while on the trial, but I’m buying TUDCA, on Amazon in preparation for when he can. As per your recommendation, Nikki, I bought one lot of Nutricost 500mg 30 tabs bottle as I could only buy one at a time. So does that equate to 5 days of dosage? Just as well I’m filthy rich ...... er, hang on, no I’m not.
Still trying to track down phenybutyrate in a med. in Australia. I’m also passing on recommendations of fish oil.
He saw a terrific young dietician yesterday, who is ordering him supplies of Fresubin (?) which sounds a bit more effective in trying to maintain weight. Not so bulky but high calorie.
Guess what, we’ve woken up this morning and we can’t smell smoke and the sky is blue! Now that’s a big deal in many parts of Oz atm.

 

[timarsha]

Hi. New here. Have been looking for a reliable source of TUDCA. Am going to source for my dad on the basis of minimal harm, potential small gains.

Have tried Italy, where tudacabil/taurolite is made. It is prescription only there. The company do not have suppliers in the UK. TheSocialMed will be £££s with their finders fee., and not sure if they can send without prescription.

Anyone had any success?