Old 12-04-2018, 11:19 AM #1 (permalink)
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Default Riluzole and Weakness

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?
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Old 12-04-2018, 01:18 PM #2 (permalink)
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Default Re: Riluzole and Weakness

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.
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Old 12-04-2018, 05:47 PM #3 (permalink)
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Default Re: Riluzole and Weakness

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.
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Old 12-04-2018, 06:58 PM #4 (permalink)
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Default Re: Riluzole and Weakness

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

https://www.mayoclinic.org/drugs-sup...s/drg-20065853
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Old 12-14-2018, 06:55 AM #5 (permalink)
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Default Re: Riluzole and Weakness

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?
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Old 12-14-2018, 08:40 AM #6 (permalink)
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Default Re: Riluzole and Weakness

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.
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Old 12-14-2018, 02:40 PM #7 (permalink)
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Default Re: Riluzole and Weakness

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?
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