Rilutek vs Riluzole - efficacy

[hollycraft]

My husband was recently diagnosed with bulbar ALS. He has been prescribed riluzole. Since we are just joining this group, I am noticing that this generic became available a year or so ago. Has anyone noticed any difference in efficacy between branded Rilutek and generic riluzole? I suppose that would most affect those who have been on this medicine for a couple of years and were switched to generic when it became available. As generics are not always equivalent to branded, I just want to make sure that in this most important disease state, there is no loss of efficacy. My husband also has Atrial Fib. He is controlled on branded Cardizem, but has an attack on generic. Thus, maybe I am over thinking this, but I just want to be sure he is getting the most efficacy from the drug. Thanks in advance for any insight.

 

[MaxEidswick]

everything II have seen is they are the same, not generic, but brand name ...

 

[affected]

Not too many PALS are on this drug for many years.

It would also be pretty much impossible to answer this question. No one taking it knows whether they are simply slower progression anyway, and anyone taking it who progresses fast stops taking it.

Sorry for your husbands diagnosis. Hopefully you can introduce yourself to us in another thread so we can get to know you.

 

[hollycraft]

Thanks much for your replies. Just tying a knot in the end of the rope and holding on….

 

[AKjo]

Welcome to the forum, hollycraft. So sorry you had to join this club.

I agree with Tillie. My husband has been taking Riluzole/Rilutek for 4 years, and he did not experience a difference between the two. It's action is not something that a PALS could notice if it is effective or not. You just have to go on faith that it is giving you 2 - 3 months extra survival time or before you become ventilator dependent.

 

[Mediasmart]

I take Riluzole. For all I know I could be taking a sugar pill. I'll never know if it does or did a thing. Frankly the only reasons I take it is because my clinic team seems to think it does some good based on their stats and it is the only thing I can do proactively in my defense.

 

[bigmark1954]

I take Riluzole. For all I know I could be taking a sugar pill. I'll never know if it does or did a thing. Frankly the only reasons I take it is because my clinic team seems to think it does some good based on their stats and it is the only thing I can do proactively in my defense.

Ditto that........good to hear sumpin from you mediasmart!

 

[MaxEidswick]

>I take Riluzole. For all I know I could be taking a sugar pill. I'll never know if it does or did a thing. Frankly the only reasons I take it is because my clinic team seems to think it does some good based on their stats and it is the only thing I can do proactively in my defense.

Harold, the same for me -- nothing ventured, nothing gained!

Mark, fwiw I like your existing avatar although I would increase the exposure, etc. Send me the original and I'll clean it up for you

 

[Mediasmart]

Ditto that........good to hear sumpin from you mediasmart!

been feelin' poorly as my dad used to say. my kids and their kids and some of their friends came. Long Island had about 4,000 walkers. Scared me to death as I am a 1 1/2 year into this and there were some 4 years in....scared my kids too....but there it is. 2 days to recover.

I'll post some more. Thanks for missing me bigmark.

 

[ECpara]

My husband started on Rilutek at diagnosis February 2012. When Riluzole became available his insurance required him to use the generic. The only difference we saw was getting 3 month refills rather than a monthly refill. All is good, have not seen any difference.