10.6.22 New Drug

The FDA announced approval on Thursday of a new drug called Relyvrio. This is especially exciting because this is only the third approved medication to fight ALS. Tuesday I realized it had been 5 years since I started Radicava and after sharing my original post I’ve learned just how much I confused everyone. My sincerest apologies! Let’s take a look at the approved drugs and learn together.


  • Approved in 1995
  • I’ve been taking since January 2015 and plan to continue for as long as I can
  • “Riluzole works by blocking the release of glutamate. Too much glutamate is believed to injure nerve cells. You will not notice a change in your symptoms when taking it. However, it is working behind the scenes to prolong your survival and slow the progression of ALS. The initial clinical trials showed a survival benefit of about 3 months. However, more recent data suggest that the survival benefit may be as much as 12 months, especially for younger patients. Therefore, it is important to start riluzole as soon as possible. Riluzole is not used to treat specific symptoms.” Michigan Medicine
  • List price of $804 monthly


  • Approved in 2017
  • I took the IV form from October 2017 until January 2021 – deported
  • I started taking the oral form in August 2022 and plan to continue as long as I can
  • List price of $145,000 per year
  • “individuals receiving Radicava declined less on a clinical assessment of daily functioning compared to those receiving placebo.” Fda.gov
  • “Although Radicava is not a cure, it may be an important advance in helping people live with the disease. Because people with ALS experience varying rates of progression, slowing the decline of that loss of function is important. Depending on a person’s level of function when they begin treatment, the impact Radicava demonstrated in clinical trials could translate into potentially helping people preserve function longer.” ALSAl


  • Approved in 2022
  • Should be available in 4-6 weeks
  • I’m requesting this prescription at my next Multidisciplinary Clinic on 11/4
  • “The patients treated with Relyvrio experienced a slower rate of decline on a clinical assessment of daily functioning compared to those receiving a placebo. Additionally, longer overall survival was observed in a post hoc, long-term analysis of patients who originally received Relyvrio versus those who originally received placebo.” FDA.gov
  • List price of $158,000 per year
  • “combining taurursodiol, an over-the-counter supplement sometimes used to regulate liver enzymes, and sodium phenylbutyrate, a prescription medication for a pediatric urea disorder, could protect neurons in the brain from damage in diseases like A.L.S. by preventing dysfunction of two structures in cells: mitochondria and the endoplasmic reticulum.” Nytimes.com

Announcements for this new medication have been exciting and read below for my cameos.

Until the new medication is available, we’ll keep shaking up our Radicava

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