1. wishmobbing

    C9orf72 and Riluzol

    My boyfriend's mutation has been identified as C9orf72, He's on Rilutek but progression is quick. Just now I read a script from a palliative nurse who cobbled something together to educate professional caregivers on ALS. There it said, that Riluzol doesn't seem to help the familial kinds of...
  2. jethro

    Using HGH instead of rilutek

    hello, i read some experts MEDICAL examinations which tell that nothing happened combining rilutek and hgh. that is the point. i dont want to use one way ticket called rilutek/riluzol, but i will use hgh only. nothing to lose. als diagnosed 09/17. hardly walk is the only problem by now. emng...
  3. Kristina1

    hate taking riluzole

    Just a rant. I'm not good at swallowing pills. It's hard for me to direct the liquid & pill in my mouth, it gets stuck in pockets near my cheeks, and when I finally do get it to the back of my mouth it is hard for me to swallow and sometimes takes several tries. Nudexta and my other...
  4. L

    Stopping riluzole

    Hi all I apologize for the spelling! Question of the week. My PALS was diagnosed with ALS in 2014. Right away they did put him in the rilzole. 2 yrs later and progression furthered but not at a fast progression he has elected to stop taking it. Any opinions on that? Good bad or indifferent? Txs
  5. V

    Cost of Riluzole

    My husband and I are debating changing his health insurance as of 3/1/16 from Kaiser to Blue Shield. One of the reasons I wanted to change it was to give him access to a better doctor and the best care possible. However, at my suggestion, he ordered Riluzole at Kaiser and it was only $30 for...
  6. V

    Nuedexta and riluzole

    So my dad(newly diagnosed) was prescribed Nuedexta and Riluzole this week. His doctor told him to start one medication at a time. So he is to take Riluzole for two weeks then start Nuedexta. He is about one week into riluzole there any harm is starting nuedexta one week early? He is...
  7. Lynk

    Availability of Riluzole

    I called for a refill of Riluzole about a week ago to Publix Pharmacy. They said they had ordered it and would be there the next day. A week later they say that it is unavailable from the manufacturer. We were able to find some at a CVS so I'm fine for the next month. Has anyone heard of this...
  8. S


    Is anyone still taking Riluzole/Rilutek? Pros/cons, anything will help. I'm considering stopping it.
  9. M

    Riluzole and other therapies

    Please let me know about your personal experience with Riluzole. Has it been helpful? Are there any side effects that are concerning? Thanks in advance for sharing your experience.
  10. B

    Probiotics and Riluzole

    Anybody out there take probiotics with riluzole? Haven't found any drug interactions online and just wondering if anyone else takes them. I have occasional flair ups of IBS and the probiotics help. Vince