Riluzole (Rilutek) Who is taking

[ReRe]

I have been prescribed Riluzole for my ALS diagnosed 7/2017 but have not filled due to cost and side effects. What is your opinion of taking this drug. Are others taking? Do they have any side effects?

 

[Nikki J]

I have been taking it for more than 3 years. I believe it helps me. I initially was faintly queasy for an hour or so after taking that lasted about 3 weeks. My liver function tests have been completely normal ( and unchanged). I got it very early and have been told it probably works better if you get it early. It is supposed to slow progression by 10 percent. If you are a slow progressing PALS this can be a big deal fast progressing not so much. YMMV

 

[andirai]

I just starting taking this about 4 days ago so I do not have much input yet. I have not experienced any side effects.

 

[KimT]

I decided against it because I wanted to keep good liver function as I am taking other meds. It took them a long time to diagnose me even though an early EMG indicated I had it.

 

[GregK]

Taking, yes. Side effects, no.

I do take Milk Thistle to help liver function.

 

[Vincent]

I've been taking it since Feb. 2014. No side effects. I have a drug plan that covers it.
Vincent

 

[KimT]

If you do take it I suggest Tudca or milk thistle, both liver protective.

 

[kellykago]

I've been taking it since December. Only feel a bit dizzy for about an hour after taking then it goes away. My liver function has been unaffected. I'm slow progressing so I'm staying on it.

 

[ReRe]

I have been taking it for more than 3 years. I believe it helps me. I initially was faintly queasy for an hour or so after taking that lasted about 3 weeks. My liver function tests have been completely normal ( and unchanged). I got it very early and have been told it probably works better if you get it early. It is supposed to slow progression by 10 percent. If you are a slow progressing PALS this can be a big deal fast progressing not so much. YMMV

My ALS began a year ago but was only diagnosed lated July 2017. When researching Riluzole it said not as effective for people with single limb onset which is how I began and now my other leg is effected. Also some literature said not to have caffeine (coffeeoff, tea) or chocolate. Do you use caffeine? I feel good from the waist up and am afraid to start the drug worrying that it will make me feel less like myself

 

[Nikki J]

I am single limb onset and remained so for 3 years. I have a friend who has 10 years only in one limb. She takes riluzole too. I have no idea how we would be without it. I have been in genetic research studies none of the doctors ( leading ALS specialists)indicated an issue with single leg- in fact said early was most beneficial. Can you share your source? Most people are single limb at onset if not bulbar. Slower progressing people can be harder to detect benefit in shorter studies too

I am not a huge caffeine person but certainly have some. The issue is it increases the activity of riluzole somewhat which might not be all bad in moderation???

I feel normal on it. If you can afford it why not try it and see? You can always stop. Does your insurance not cover it?

 

[DaChief]

Even taking it for a few months. No side effects and no liver issues. Who knows if it helps or not.

 

[ReRe]

I am single limb onset and remained so for 3 years. I have a friend who has 10 years only in one limb. She takes riluzole too. I have no idea how we would be without it. I have been in genetic research studies none of the doctors ( leading ALS specialists)indicated an issue with single leg- in fact said early was most beneficial. Can you share your source? Most people are single limb at onset if not bulbar. Slower progressing people can be harder to detect benefit in shorter studies too

I am not a huge caffeine person but certainly have some. The issue is it increases the activity of riluzole somewhat which might not be all bad in moderation???

I feel normal on it. If you can afford it why not try it and see? You can always stop. Does your insurance not cover it?

My copay is $191 per month and when I go into the donut hole (Humana/Medicare) I pay 100% of cost and then out of donut hole I will pay a percentage again. I'll look up where I read the info on the caffeine and let you know later. Thank you for your responses. You are a good resource and I feel lost not knowing anyone with ALS and I live in a small town and have to go nearly 200 miles for my ALS doctor. From your info I guess I will give Riluzole a try. Thank you again.

 

[Nikki J]

I wasn't asking about the caffeine but about the single leg comment. Do you have the source for that?

That is a big copay. Maybe next year you can get a better plan though the donut hole is always a problem. If you decide to try it and hit the donut hole without a chance of going out the other side you might look into paying cash. I had to pay one month because of a pharmacy glitch. The price ranged between over 600 to 280 with a goodrx coupon

 

[Jocalyn8]

I havie been taking for 2 years no issues.

 

[ReRe]

I decided against it because I wanted to keep good liver function as I am taking other meds. It took them a long time to diagnose me even though an early EMG indicated I had it.

I see you were diagnosed in 2015 and chose not to take the drug, Has your progression been slow anyway? Also did you start with single limb onset? Was your doctor okay with you not taking Riluzole? Any info you feel comfortable giving to me will be helpful