husband just diagonosed and terrified

[affected]

Search here on Riluzole has Nikki has given some really important information a few times about how careful you need to be with what you eat before and after the dose. This could be his issue.

If not and he wants to stop, there is no point taking something that is making your quality of life worse. My Chris had side effects too and only took it a few weeks.

 

[scaredwifetx]

Hi Nikki,

I looked through the stickies but could not find anything on the type of foods you eat before and after you take the Riluzole. I would love to figure it out so he will continue taking it. He woke up without a stomach ache so said he was not taking it today.

 

[affected]

This is what Nikki wrote in the Riluzole sticky

If you decide to take riluzole it is important to take it correctly.
Because it is inactivated by fat it should be taken on an empty stomach. Take it two hours after eating and then wait an hour before eating. Take it at least 8 hours apart but as close to 12 hours as possible.

 

[scaredwifetx]

Thank you Tille. Thiink he has decided to stop taking it. He does follow the rules about times and eating but it is making him so tired and stomach hurts all the time so not worth it for him.

 

[Janie H]

Prayers for you, Nikki is right about riluzole and Tillie is right about the shock of it all, the side effects will go away over time, you will get used to it all, ALS is fast tracked as far as social security, apply for everything that you can. I'm waiting the hour to eat after taking my riluzole

 

[gooseberry]

My husband takes it at mid evening then when he wakes up in the morning he takes it along with a couple other meds. He crawls back in and sleeps a couple or four more hours. He always takes it with juice...usually like a crangrape.

 

[scaredwifetx]

Once again, thanks everyone. I am not sure what I would do without all of you. He did take it today but did not take the prostate med. His stomach did better and he was not as tired. He started Flomax 10 days after the Riluzole and I think it is the combo. He can do ok without the Flomax so hope it is the combo and not the Riluzole. We will just have to take it like everything else right now, one day at a time. We will try the juice and rest and see if that works.