Riluzole and side effects

[Tomswife]

My PALS, Tom, started Riluzole in August 2022 at the time of his dx. He has been declining each month. In February he was barely conscious, weak and drowsy all the time. I thought I would lose him fairly soon.
I called the neurologist to discuss stopping the Riluzole. Are we getting only side effects and no benefits? Probably. I stopped the Riluzole mid February.
Over the past two weeks he has been perking up. His eyes are OPEN all the way! He laughs and smiles every day. We have made no other changes. Perhaps the Riluzole was causing these strong negative side effects. If the drug was extending his life, it was doing so in a way where he was barely conscious.

I should add that his oxygen levels are still around 94 resting, even at this "perky" phase. If we move him his oxy will go up a bit. I hope he remains perky for a long time.

I know the studies have shown great benefit from Riluzole. I just want to present a different perspective, that of the side effects. Every PALS is different. Benefits and side effects manifest themselves in unique ways with each individual.

 

[Mana]

So happy for this news - I hope your husband continues to be present and perky!!

 

[poet1973]

Tomswife
I myself have been on riluzole for about a year no significant side effects but I feel like my progression hasn't slowed much. Still able to get around the house pretty well but my wife makes me use manual chair if we go out. I'm glad to hear that he has perked up. I'm waiting to get on relyvrio hoping it slows it down more.

 

[KimT]

I was given an Rx for Riluzole in 2015. I took a couple of pills and it made me tired and hurt my stomach. I do think it has good evidence that it helps, at least some PALS but I have stomach issues and it just wasn't for me. When I went to Johns Hopkins for a second opinion, they urged me to try it again. I just didn't.

Every PALS is different. I have some supplements that I'd never stop taking. Do they work? I'm not about to find out by not taking them.

 

[lisa g]

Is anyone having a problem refilling their Riluzole? I put in an order to refill it 10 days ago. CVS said that they're having an issue with the manufacturer. I've tried Walgreen's, Sam's club and smaller independent pharmacies. It seems that they're all having issues. No one has been able to tell me when it will be available.

 

[Landis02]

We’ve had no problem getting it from ExpressScripts. We got our last delivery about a week ago.

 

[KimT]

Canada has it. I checked both pharmacies. Brand name only. About $150 for 56 tablets.

 

[lisa g]

That's encouraging to hear, hopefully CVS will get it in soon. I took my last one today.

 

[Mana]

we just filled a 90 day RX at Costco in North Carolina. No issues

 

[Buglaw]

I just filled a regular 30 day prescription at Walgreens without problem.

 

[lisa g]

It might be the Florida suppliers. We checked again today and still can't get it filled.

 

[Gizzmo]

Filled my hubbys at Aurora pharmacy in Wisconsin with no problem hopefully yours will also be filled soon

 

[lisa g]

I received a text yesterday they finally were able to fill it. It took over 10 days to get it in.