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Thread: Drugs etc

  1. #21
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    Thankyou Kayleigh x Yes, I'm aware that one of the very few benefits of the disease for me so far is that although I'm losing function and get crazy tired, I don't feel ill in myself. So to take something that could make me feel ill would have to be a careful cost/benefit analysis. My uncle said it it benefited some, and it could be worth trying to see how well I tolerated it. Lisa x

  2. #22
    Hi Catsparkle

    You're absolutely right to take time to come to an informed decision.

    I think the paper Ellie showed us, which I didn't know about, is particularly relevant.

    All I can offer is anecdotal evidence of no side effects after taking it for 18 months. But we are all different!

    Doug

  3. #23
    Forum Member Kayleigh's Avatar
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    Hi Lisa,

    It is good that you have your uncle to discuss Riluzole with because, being a Research Professor, he must be great at helping you analyse all the information available - there is so much to read on the Internet that sometimes we can get information overload!

    I am with you about MND causing tiredness. Have you been prescribed any nutrition drinks such as Complan or Fortsip? If not, you may wish to speak to your Dietitian (if you have one) or your GP about getting some prescribed. These may give you more energy as they will boost your intake of calories and vitamins/minerals.

    Love and best wishes,
    Kayleigh x
    Last edited by Kayleigh; 30th November 2018 at 16:43.
    We are a fabulous forum family - the precious bond we all share is powerful and strong!

  4. #24
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    I questioned taking riluzole when I was first diagnosed. My neurologist explained that the often quoted 3 months more was the result of a 18 months trial so 3 months longer life for every 18 months seems worth it to me.
    Also I agree that some trials do not allow anyone who takes riluzole to take part but not all trials! I am on a trial and as long as I stay on riluzole for the duration!
    Let’s hope that in the future riluzole with become a drug of the past....Dani

  5. #25
    Forum Member Kayleigh's Avatar
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    Hello Dani,

    I was interested to read your post and to learn that you are taking part in a clinical trial. I hope that everything is going well for you.

    The only other person I have read about on this forum who is doing a clinical trial is Marigold, who is on the MIROCALS trial.

    I read on the MNDA website that if someone wants to be considered for the MIROCALS trial then they must not have taken Rilozole yet (from reading Marigold's posts, Rilozole is taken during the trial after some baseline tests have been carried out).

    I hope you are having an enjoyable weekend.

    Love and best wishes to you (and also to Marigold if she reads this post).

    Kayleigh x
    Last edited by Kayleigh; 2nd December 2018 at 00:04.
    We are a fabulous forum family - the precious bond we all share is powerful and strong!

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