Initial reaction to Relyvrio

[phyllis2714]

Hello, my mother was recently diagnosed with ALS and prescribed Relyvrio. The time she took it she was immediately nauseous for 45 mins and then explosive diarrhea started. It was awful and now she won't take it. The doctor first said not to bother taking it and then when pushed said to try it again if we wanted. Does anyone know if this gets better or if there is anything that can help? We really would like for her to be able to take it. Thank you.

 

[Tomswife]

My PALS Tom was okay with Relyvrio for the first two weeks. Then the relentless diarrhea started. My husband has to go on the hoyer lift over a commode or bedpan, since he is bed ridden. We were doing this 5 to 7 times a day. The neurologist agreed, done with Relyvrio. The diarrhea was the most common side effect on clinical trials.
I called our Amylyx care coordinator. He said the diarrhea should lessen if you remain on the drug for 5 weeks or so. I explained that is not possible when PALS uses a sling and hoyer - too stressful.
I think this drug may have more promise for PALS who can walk and are slow progressing.
It is best to speak with the neurologist before you decide what to do. You can also call Amylyx, but you would be talking to someone with a vested interest in a PALS remaining on Relyvrio.

 

[Marieb425]

Phyllis, I’m sorry to hear that happened to your mother. My husband has been on Relyvrio since around thanksgiving with no side effects. However, he was on TUDCA since his diagnosis, end of august, until he started the Relyvrio. I don’t know if starting on the Tudca helped his body acclimate to it and then he could tolerate the relyvrio fine. In case anyone wants to try this, we ordered the Tudca on amazon and slowly increased the dose. *Tudca is one of the ingredients in Relyvrio.

One potential note - he seems much more sensitive to dairy than before, which could be relyvrio or could be the other medications he’s on too (Riluzole, Radicava ORS and Relyvrio). On the days he’s eaten dairy, he has complained about an upset stomach but as long as we stick to a dairy free diet he’s been fine.

 

[poet1973]

I haven't started relyvrio yet but I'm supposed to be starting soon I hope. I've also been taking tudca and sodium butyrate also. My Dr also told me that when I start it I may need a lite snack or milk because of nausea or stomach upset. Don't know if this would help. Hope everything gets better for your mother

 

[phyllis2714]

Thank you all for your responses! I did reach out to Amylyx but nothing helpful so far. I was not familiar with Tudca but will look into it. So helpful to have this feedback.

 

[John445]

I took my first dose of Relyvrio this morning. I was expecting a terrible taste, but surprisingly found it not to bad. I am feeling a bit strange (stranger than usual lol) and a bit shaky. We will see what comes as I continue on the med. John