What questions do you have for your medical team?

[Elizabeth Pacheco]

<p style=”text-align: right;”>Have been on Relyvio  for  a few months how do I know it’s working for me.? I’d like to know why we aren’t notified about Established E AP programs? It seems we have to do our own research and extensive inquiries to find  and if we are lucky participate in an  E AP program. The Major  Medical centers who are participating in these  programs, should reach out to the ALS patient community when these programs are available.</p>
 

[Dagmar]

Elizabeth – – what is an “E AP program” ???

[Gideon]

Hi Elizabeth

Please what is an “E AP program?

My wife stops using Relyvio after 2 weeks she doesn’t Tolerate it

[Reese]

I stopped taking Relyvrio too, due to headaches and extreme fatigue with only taking 1 package per day.  I’ve been trying to research the efficacy of Relyvrio vs. Radicava because I want to know the possible  impact of not taking Relyvrio.   My medical team are not statisticians so they can’t answer this question.  Relyvrio has presented their data on a monthly basis – and you have to dig for it on the internet, while Radicava presents their data on a 6 month basis (the length of both trails) – so  it’s extremely difficult to compare the two drug’s efficacy.  I suspect this might be intentional.  As everyone knows, Radicava clearly explains the benefit in their packing slip – they even show the bar chart from the trial.  Nothing comes with the Relyvrio about the stats of their phase 2 trial.

Here are the stats.  Based on my research, the lower P value for Radicava means the data is more valid.

Radicava: 68 people took drug, 68 placebo.  Difference in Loss in ALSF-R over 6 months = 2.49.  95% confidence interval = 0.99, 3.98.  P = 0.0013

Relyvrio:  89 people took drug, 48 placebo (6 month trial).   Difference in Loss in ALSF-R = 0.42 per month.  95% confidence interval = 0.03, 0.81.  P=0.034.

[Reese]

https://www.nejm.org/doi/full/10.1056/nejmoa1916945

This NEJM article on the sodium phenylbutyrate–taurursodiol drug is very informative.  Table 2 states:

mean difference in ALSF_R = 2.32 for 6 months, 95% CI = 0.18, 4.47, P = 0.03

So there’s the apples to apples comparison. The Edaravone study produced statistically more significant results – as evidenced by the tighter confidence interval around the mean value, and the significantly lower P value.  But this doesn’t mean it can’t be helpful, just means the study results aren’t as solid.  I’m starting my second and final week of vacation from sodium phenylbutyrate–taurursodiol to verify improvement – my neurologist agrees it’s about quality not quantity.