Riluzole and Weakness

Status
Not open for further replies.

Emanol

Active member
Joined
Apr 3, 2018
Messages
60
Reason
Loved one DX
Diagnosis
09/2017
Country
SP
State
NY
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

Distinguished member
Joined
Oct 5, 2018
Messages
203
Reason
PALS
Diagnosis
09/2018
Country
US
State
illinois
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

Moderator
Joined
Mar 16, 2015
Messages
2,262
Reason
DX UMND/PLS
Diagnosis
06/2015
Country
CA
State
BC
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.
 

Emanol

Active member
Joined
Apr 3, 2018
Messages
60
Reason
Loved one DX
Diagnosis
09/2017
Country
SP
State
NY
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

Distinguished member
Joined
Oct 5, 2018
Messages
203
Reason
PALS
Diagnosis
09/2018
Country
US
State
illinois
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

Active member
Joined
Apr 3, 2018
Messages
60
Reason
Loved one DX
Diagnosis
09/2017
Country
SP
State
NY
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?
 
Status
Not open for further replies.
Top