Riluzone and spasticity

[Tedstehr]

Searched through prior posts that may have covered this, but anything related was closed.

Has anyone on Riluzone felt less spasticity? I am on Edaravone and Baclofen but still encountering lots of spasticity in my legs. I was hoping Edaravone might reduce it. If Riluzone lowers glutamate, does it also reduce spasticity?

Thanks all.

 

[KarenNWendyn]

Ted,

I don't know if Riluzole decreases spasticity. However, if it protects motor neurons by reducing glutamate, it might help decrease progression of spasticity. If you are having more spasticity, my first thought would be to talk to your doc about increasing the Baclofen, or possibly changing it to Tizanidine. Perhaps others with more Riluzole experience can weigh in here.

Best of luck,

 

[Tedstehr]

Thanks Karen. I think about you all the time and worry about your progression since we are onset twins. How are things going with you?

 

[Firefighter58]

Karen is correct, my neurologist upped my Baclofen and my legs felt much better.
Al

 

[KarenNWendyn]

Hi Ted,

Baclofen dose can be increased gradually up to 80-90 mg/day, but definitely check with your doc to see if this is appropriate for you, make sure there are no contraindications, etc.

I'm hanging in there, noting some progressive weakness primarily in legs, but a little bit everywhere. I'm still walking with AFOs. I think I have more lmn findings and you have more umm. I do have some spasticity, though, and take Baclofen 10 mg 3x/d which I think helps some. I'm watching you closely with your Edaravone experience and really want to know what you notice after a few cycles.

 

[ShiftKicker]

I've heard report on another social media platform that it increased spasticity for someone. He was UMN onset ALS, so not sure if that has bearing on the side effect.

 

[bigmark1954]

I have been on Rilusole for just under 4 years and it may have helped in the beginning, but my spasticity is really kicken my a$$ and is body wide at this point.

I fall more often when taking Baclofen, so I only used it for a few weeks about 3 years ago.

I need to bite the bullet and schedule a clinic appt. I haven't been for about 2 years cuz it was starting to feel redundant. This spasticity I am having right now will probably end my mobility if I can't find sumpin to help curb it.

 

[Nikki J]

If the more usual things don't work someone on FB said her neuro ( well known in the ALS world) is using mexilitine. As you probably know it was found to help ALS cramping. Apparently a PALS reported improvement in spasticity and they have been using it with some success especially in younger PALS. It is a cardiac med so not everyone would be able to take it

Mark if your spasticity is worse maybe a trial of low dose baclofen? My sister had to balance her dose her spasticity helped counteract her weakness so eliminating it was bad but lessening it was good

 

[Tedstehr]

I'm hanging in there, noting some progressive weakness primarily in legs, but a little bit everywhere. I'm still walking with AFOs. I think I have more lmn findings and you have more umm.

Could it be the weakness is just a side effect of the disease without neurons being involved Karen?
Edaravone has given me more energy. Perhaps it will offset some of the weakness you are feeling.

Stay strong sister!