Riluzole

[Nikki J]

This is a review article looking at various post release studies of Riluzole. The take away is it probably confers more survival benefit than the 2-3 months cited from the original trials There was also a study that didn’t show overall survival benefit but it appeared to move the progession curve a bit - meaning longer higher functioning and less time in the later phases

https://www.tandfonline.com/doi/pdf/10.1080/21678421.2020.1771734?fbclid=IwAR3K0eJDP3LElX6xu-3I8Zf2fCIYS6h6MIQG0D9hfGobUoc0AL3TocUtBWI

 

[Samkl]

Thanks Nikki, for posting this. My brother isn’t on Riluzole because of the start date of the trial he is on (which then started late anyway !). He has been told it’s not a game changer (which I posted here), but I have always thought he should definitely be on it, and will forward this link to him to use to convince his neuro team. 👍

 

[affected]

@Samkl it seems that the earlier you get on the Riluzole the better the benefits that Nikki mentions above. So the longer from symptoms starting to Riluzole starting, the less benefit (not none, but it works best by slowing things right at the beginning if you know what I mean)

 

[Nikki J]

If he is currently in a trial I don’t think he can start Riluzole in the middle of it. Usually riluzole is allowed if one has been on a stable dose for 30 days before trial evaluation.

this isn’t a new study. It is a review and analysis of existing studies and is information that has really been out there right along. it is generally agreed as Tillie says earlier will bring you more benefit. Time gained will depend on when you start and how fast your inherent progression rate is. My neuro says ten percent slowing on average and probably more if you get it super early

 

[affected]

Oh yes I agree with Nikki - if he is on a trial that excluded PALS on riluzole, then he can't just start taking it after starting the trial either. It probably seems harsh, but if you think about it, how can they be sure the trial drug is working if there are other factors at play, hence the exclusion. With ALS there are only choices, we never really know, even with hindsight if they were good choices or not because we have no way to know if riluzole would have made a big difference for him if he had chosen differently.
Some PALS just don't tolerate it, some tolerate and still progress rapidly, so nothing is certain. If your brother made an informed choice, may I suggest you simply support him in that. My husband decided he didn't like how he felt very quickly on riluzole and stopped taking it (within weeks). I simply supported his right to decide for his own body and disease.
I sure wish there were clear cut things we could make decisions on, but there just aren't.

 

[Samkl]

No, he wanted to go on Riluzole. He is on the cu(II)atsm trial, and his last dose is around 26 July. He continually asked about Riluzole but there was a muck around with one of the doctors on holidays or something, so some results didn’t come back early enough to start and establish the dose before the trial (which was delayed again anyway!), as per trial criteria. I posted here way back when he was concerned about not establishing the dose before the trial, and that’s when he was told it wasn’t a “game changer”. I don’t think anyone thinks it is, but you’d go on it rather than not, I think. I always felt they had to say that, given the weeks and weeks delay he had because of whatever the holdup was.

 

[affected]

Sorry Sam that's frustrating.

 

[Samkl]

Don’t let me start, Tillie......