[Klaus68]

Michael, difficult to answer with a clear yes or no.  In familiar ALS we have the genes e.g  C9orf72, FUS and SOD1 with clear causalities in ALS cause by damaging motor neurons (MN) mostly triggering the mislocation of the hallmark ALS protein TDP-43 from the nucleus to cytosol and generating TDP-43 deposits.  Since TDP is regulating its gene expression in MN itself, these deposits lead to further diss-regulation and more deposits, a vicious cycle starts with the end result in MN dying.
In non familiar ALS TDP-43 is also thought to be the root cause but why is deposits in the cytosol of MN and what triggers this is unknown. There are many angles looked at from mitochondrial dysfunction, stress causes inflammation causes and many more. Most recently there had been a publication claiming over 140 different genes being linked to ALS in non familiar ALS. So which one to go after?? If we know which one(s) are good reasons to target to have meaningful disease alterations Crispr or Antisense or RNA interference can all be deployed to “fix” it. It’s complicated. At this point only further research can help untangle these relationships. So funding this research and education about ALS is the best we can do to speed up the hunt for further medicines.  Long answer and not satisfying I know. But I guess it sums up the reality where we are  in research right now. If you are interested I can share literature references for you to read up more.

[Klaus68]

Very good point about the antiacids. Aluminium and magnesium salts of phenylbutyrate might be very insoluble. They often are.
Suzanne, are you taking any medication for your lack of gallbladder. usually this is the case. It might make sense to discuss with your PCP. Eventually you can reduce this medication now and see if the diarrhea gets better. But don’t change without consulting your PCP or ALS doctors.

[Klaus68]

I have been on Relyvrio (BTW terrible name choice IMO) since about a month. (I am also on Radicava oral and Riluzole since my diagnosis in July 2022)) . I have not noticed any side effect from Relyvrio. I do combat the truly terrible taste with chasing it with a small glass of LEAP 2befit (orange) in the evening and in the morning with coffee thereafter. That does take care of the bad aftertaste in my case immediately.

I wondered about the need of it to be in powder form. I am working in drug discovery and biotech and I wonder if it has to do with levels of those two medications in blood to achieve maximum effect. In capsule form the uptake into the blood stream from the stomach would be slower. I will try to get this confirmed by Amylyx and post it here.

Also as told from my doctor and of me being a chemist myself, the OTC version of both medications have to be researched carefully in regards of their quality and purity. So make sure it is a reliable quality and source. (e.g. GMP manufacturing etc.) But if in the unfortunate case your insurance does not cover Relyvrio, which sadly has also been mentioned here in the post as well, taking the OTC versions is  an absolute and recommended alternative.

For those struggling with approval please consider reaching out to the Amylyx care team. Together with your doctor, insurance and the care team you might get it approved and also can sign up for full copayment coverage. Link here: https://www.amylyxcareteam.com/

Wish you good luck and keep up the fight!!