Daily schedule of rilutek

[Nikki J]

Since saltines are 24 percent of calories from fat maybe not but I agree choose your snack wisely which is the advice that I was given at Mass General. But I have just kept to the empty stomach rule so far. I am not sure whether a piece of fruit for example would help or hurt the mild nausea I get

 

[pecas]

Ack! Sorry; I'm not a big cracker eater, so I'm not savvy about the fat content. I think fruit would make me worse. I know I can't do fruit first thing in the morning without something else in my stomach.

 

[MaxEidswick]

>Riluzole is well absorbed (approximately 90%), and has an absolute bioavailability of about 60%. Administration with a high fat meal decreases absorption, decreasing the area under the plasma concentrationtime curve (AUC) by about 20% and decreasing peak blood levels by about 45%.

alway learning something new here

 

[pecas]

Gotta keep our brains busy! Otherwise, the chattering monkeys will take over.

 

[nebrhahe53]

Interesting about the CBC and liver function tests-never had a blood test on riluzole.Guess I should start.
Anyone consider taking rasagilene off label with rilutek? rasagilene is being tried in a clinical trial now

 

[MaxEidswick]

>Otherwise, the chattering monkeys will take over.

just hang around here and see if you don't think ... One Flew over ...

 

[Nikki J]

Neil my clinic checks 2 liver tests before allowing you to start then check monthly x3 then 3 months then 6 then yearly. They don't require the cbc
The problem with the off label uses of existing prescription drugs is usually cost. Insurance won't pay as they are unproven and they are expensive. If you can before asking for an prescription look it up on your insurance formulary. It is probably a PA ( prior auth)

 

[nebrhahe53]

Guess I need to get the liver tests-I can get rasagilene from Canada at about $150/month. At that price it might be worth it to try on my own. Seemed to help in phase 2 trials. Some people pay more for supplements.

 

[gooseberry]

My husband had the same liver fxn testing schedule as Nikki. Apparently Rilutek can elevate the liver enzymes. The neuro said it is okay unless the ALT gets to be 5x normal or you are jaundiced. It is the risk/benefit equation. My PALS didn't notice anything with the Rilutek for a couple of weeks then he didn't need his neck collar, his fasciculations diminished some, his muscle cramping improved(decreased greatly), and basically he gets around better. He isn't as tired eating so he has been able to maintain his weight since he started on the Rilutek.

 

[GregK]

Anyone consider taking rasagilene off label with rilutek? rasagilene is being tried in a clinical trial now

As always, I did a quick lookup on this.
ALS/MDA News magazine had an update a year back that included (IMHO) both good and so-so:

Interim results in an ongoing phase 2 trial for rasagiline in people with ALS show that the experimental therapy appears to be safe, with indications that it hits its intended biological target. Results were reported March 20, 2013​

:​

So far, ALSFRS-R scores in participants have declined at a rate similar to the rate seen in “historical controls” (data from a similar group of ALS patients who were previously observed in other studies, and who did not receive the rasagiline treatment).​

I could not find more current info...?

 

[Janie H]

I'm going to try taking it on a empty stomach, thanks Jim! Also says a full glass of water. Why would my dr insist that I eat?

Janie

 

[pecas]

After about a week on riluzole, I've noticed my fasciculations and cramps are both less intense and less frequent. The fasciculations in particular were getting out of hand (making my skirt dance around when my thighs got going). So I guess my schedule is working. I've settled into taking it first thing in the morning (7ish) and at about 10 pm. I know that's not every 12 hours, but it's working and my stomach is reliably empty.

 

[MaxEidswick]

Thanks, all -- now taking it 2x/day w/ 8 oz water 1 hr before smoothies

 

[GregK]

Janie > Why would my dr insist that I eat?

Perhaps one of his patients had issues taking it on empty stomach ...

 

[gooseberry]

Greg, Our neuro said she offers it but few patients take it. We saw her on Monday . She mentioned that she was surprised more patients didnt take it since it seemed to help most that did. Perhaps he doesnt have a lot of experience with it.