[Jane Johnson Murray]

My disease so far is limited to my upper extremities. It has taken 2.5 years for the weakness and paralysis to progress down my arms and into my fingers. I am told this is a slow progression.

I take both Radicava oral and Relyvrio. I have very good insurance (a medicare advantage plan) and my copay per month for each med is $60.

I have no idea how to tell if the meds are slowing progress since I am a single data point and have no control in my little experiment.

 

[Jane Johnson Murray]

I spoke to a specialty pharmacist and asked about the gel caps. She suggested that the compounds need to be fully dissolved in water before they reach the stomach, in order to be absorbed.

I also enquired about the fact that one shouldn’t take antacids containing Aluminum while on Relyvrio. She suggested that the sodium ion in the sodium phenylbutyrate  could get exchanged for Aluminum ion and make a different  compound, aluminum phenylbutyrate.

[Jane Johnson Murray]

I am taking relyvrio and just started on the two a day. It is simply horrid and makes me shudder involuntarily.

The pharmacist at Optim suggested Listerine  strips before and after which helps a bit.

Drinking all of the liquid at once makes me feel nauseated for a few hours after. And the taste lingers.

Is there a way to contact the manufacturer and question about the gel cap possibility? I have wondered that myself.

[Jane Johnson Murray]

I have been taking Relyvrio for a couple of months. I eat dark chocolate before and after to help with the bitter taste. (That’s my story and I’m sticking to it!)

I had been using listerine strips but they stopped working.

I feel slightly dizzy for a few hours after each dose, but then it is gone.