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    #46
    Hi Marigold

    I've also heard that taking Riluzole on an empty stomach can help with the efficacy of the tablet. The usual recommendation is to take the first tablet as soon as you wake up and don't eat anything for an hour afterwards. Then for the evening tablet wait until two hours have passed from your evening meal and take the second tablet. Again you shouldn't eat anything for an hour. I don't think it would make a huge difference so I follow the above advice reasonably closely but don't worry about it if say I eat something half an hour after taking a tablet.

    Mick.

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      #47
      My pill taking didn't get set to be on an empty stomach but almost always is coincidentally. I take my morning Riluzole an hour before breakfast mostly because the alarm on my mobile is set for pill time. But today I got up before the alarm and so breakfast my usual hour or two later (a life long habit) fell about half an hour before my pill. My evening one is similarly almost always on an empty stomache but if we occasionally decide to have a little supper it has sometimes been taken just before, just after and once with food. The reason that they say take on an empty stomach could be airing on the side of caution seeing as it states somewhere or other to avoid things with calcium in when taking Riluzole ie anti-acid medication as it is usually based on calcium carbonate. I am open to be corrected as this has been a learning curve. Lynne
      ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my ballance.
      I'm staying positive and taking each day as it comes.

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        #48
        Hi Marigold,

        As Mick says, Riluzole is best taken on an empty stomach. This is because fat reduces the absorption of the drug by the body.

        However, the Patient Information Leaflet enclosed in each box of Riluzole makes no mention of this fact, so if it makes you feel queasy, it's better to take it with a light snack, rather than not at all.

        The fat V absorption data is on the Summary of Product Characteristics for Riluzole - a more in-depth analysis for meds and available online.

        Love Ellie.
        ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
        Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

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          #49
          Thanks Everybody,
          I will plan to eat on empty stomach then.
          Though this will probably end up being a challenge in itself as I always seem to be really hungry nowadays!
          Marigold

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            #50
            Hi Marigold;

            Like Mick I try to take it on a empty stomach, ie two hours after or a hour before food. I read somewhere that it works better by 35 % taking it that way. But like Mick I don't get hung up on this and sometimes take it very close to eating and 10 hours apart.

            Do what suites you and fit it in the best you can.

            Love Terry
            TB once said that "The forum is still the best source for friendship and information."

            It will only remain so if new people post and keep us updated on things that work or don't work and tips.

            Please post on old threads that are of use so that others see them and feel free to start new subjects and threads.

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              #51
              Hi Guys, I've only seen my consultant once and he said he'd put me on riluzole if I wanted but was quite dismissive of it. If I enter a trial I'll be taking it then, but what do you think of it?
              Thankyou,
              Lisa x

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                #52
                What trial are you entering? Most trials I’ve been aware of say you have never had to have taken Riluzole. My daughter got the liquid form from her consultant no problem,

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                  #53
                  Well, it's the only licensed med for ALS we have in Europe atm, so I'm all for it, but it is up to each of us what meds and interventions we do or don't want to take/have.

                  It's best started as early as possible in the disease and although the trial results showed a measly 3 month extension in life, it's not known how accurate that is.

                  It is thought to delay the need for NIV.

                  You do need regular blood tests to keep an eye on your liver enzymes.

                  Love Ellie.
                  ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                  Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

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                    #54
                    Hi Jaxx, that's what I meant, that I wouldn't be able to take it if I wanted to do a trial,but would be exoected to when on it. Mirocals is the one Ive been asked about but it sounds quite difficult compared to others I've read about (but can't go on!)

                    Hi Ellie, I'd definitely be interested in delayed progression and NIV. The consultant and MND people didn't feel they'd seen a significant difference in life span, but that's anecdotal I guess. I guess if Mirocal is the only recruiting trial in my area i could start on Riluzole, or wait until after the MND conference and see if there are others in the pipeline. Although from what I've read, earlier intervention is better..

                    love Lisa x

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