Riluzole and Weakness

[Emanol]

My father has started taking Riluzole for PLS. He has noticed increased weakness (for instance, he used to be able to stand up easily and now he has a lot of trouble standing alone from the couch). Is this normal? Do you think it might be a result of the disease? It started quite abruptly since he started taking it and he says he generally feels weaker than before. Anyone with experience on Riluzole?

 

[dldugan]

I have also experienced increasing weakness, but I am attributing this to ALS progression. But I think lack of or loss of strength is a common side effect and I am asking my Clinic about this.

 

[ShiftKicker]

It's not as common in N America for those diagnosed with PLS to be prescribed Riluzole. I'm not sure if it's prescribed at all for PLS in Canadian clinics. I know mine doesn't, I asked- and rarely prescribes at all to anyone with MND based on recently published use rates by province in Canada.

A quick search of the PLS subforum brings up a few mentions, but I don't see any comments about related weakness. But that's more likely due to the low rate of prescription/use for those with PLS. In a broader search of the entire forum, there are a few mentions of weakness/fatigue that people have found in relation to taking Riluzole.

 

[KimT]

I would check with my doctor. It is listed as a "less common side effect."

https://www.mayoclinic.org/drugs-supplements/riluzole-oral-route/side-effects/drg-20065853

 

[Emanol]

I will try to get a second opinion. It is clear to me he has worsened -not considerably, but a little bit. Might it also have to do with the fact that he stopped taking amantadine?

 

[dldugan]

I have had the same experience and the Clinic took me off Riluzole 8 days ago. I have noticed no improvement and I suspect they will have me start the medication again. Since being off the medicine I have had some fasciculations for the first time.

 

[Emanol]

My father has had more clear episodes of trembling, for instance when he first stands up or when he yawns. Am I right to believe those are clonus and not fasciculations?