1. lgelb

    Relyvrio update

    An update from Amylyx adapted from two Biopharma Dive articles: Approximately 3,800 PALS were taking Relyvrio at the end of June, Amylyx said in a conference call held Thursday to discuss the company’s second quarter earnings. That’s a step up from the estimated 3,000 patients who were on...
  2. M

    Relyvrio and hip pain?

    At first I got dizzy upon taking am Relyvrio. Then got dizzy for both doses. Then got horrible hip pain, am and pm, upon taking it. Took 4 days off, no hip pain. Anyone else?
  3. poet1973


    I received my relyvrio today . Was wondering when I should start taking the instructions are a little hazy. Is it better to take it in the mornings.
  4. M

    Cigna - not covering Relyvrio

    I received this in an email from “I Am ALS” today. More info is on their website: “I AM ALS is appalled by Cigna’s decision to not cover an FDA approved treatment for ALS that extends functionality and life. Cigna needs to immediately reverse this decision. People living with ALS deserve...
  5. P

    Interaction with nuedexta and albrioza/relyvrio

    Our neurologist was all set to prescribe us nuedexta (compounded here in Canada) but then decided not to due to potential interactions with nuedexta and albrioza/relyvrio . Apparently there could be a negative effect on heart function and blood platelet. Has anyone heard of this? Is anyone...
  6. M

    Miracle Berry for Relyvrio

    My new Synapticure neurologist suggested I buy Miracle Berry online to make Relyvrio palatable. Haven't tried it yet but wanted to share the info.
  7. N

    sodium phenylbutyrate

    Hi Friends, I'm waiting on Dr appointment in hopes of getting TUDCA/sodium phenylbutyrate prescription - will take a few weeks best case. Does anyone know where we can source sodium phenylbutyrate ? Thank you
  8. B

    Relyvrio taste —how do you take it?

    I just got my starter pack of Relyvrio and took the first one today. Well actually half—the taste is so bad. Like bile/vomit 🤢🤢 I’m pretty tough, but man…2 times a day of that, I need some tricks! I used the listerine they sent. I also thought about using a straw? Idk I’m struggling with this...
  9. M

    Relyvrio now on the VA Formulary

    Hi, I informed my VA Neurologist that Relyvrio is now on the Formulary ( I asked her to please write a script and ship me some soonest. She replied that she can't right away, and that she now...
  10. B


    I may start taking the new approved ALS drug Relyvrio. Wondering if there is anyone out there who has been taking it for at least a couple months willing to share their experience thus far.