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  • Catsparkle
    replied
    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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  • Ellie
    replied
    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.

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  • Jaxx
    replied
    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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  • Catsparkle
    replied
    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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  • Terry
    replied
    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

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  • Guest's Avatar
    Guest replied
    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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  • Ellie
    replied
    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.

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  • Lynne K
    replied
    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

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  • mickmac
    replied
    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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  • Guest's Avatar
    Guest replied
    Hi Everyone,
    I am now taking my riluzole and have experienced no side affects so far ( a month in),
    I was not given much guidance on when to take it other than every 12 hours to suit me.
    My question is, should I be taking it on an empty stomach?
    I haven't been! I have read this somewhere but am not sure if this is to minimise side affects or to maximise efficacy?
    Can anyone advise and should i change routine?
    Marigold

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  • Ellie
    replied
    Yep Terry, it over £100 more expensive, per month, for the liquid form of Riluzole - it's on patent. x

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  • Terry
    replied
    Yes Ellie, you're right,

    It would appear that the liquid costs £100 for the equivalent of 30 tablets and most brands of riluzole cost £14.80 for 56.

    Very strong insentive not to supply the liquid form.

    My figures could be wrong.

    Love Terry

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  • Terry
    replied
    Hi Chimp;

    Not sure of the costs involved and some people do get it offered and some, as you say have to jump through hoops.

    At least people know what it's name is and the maker, some doctors don't seem to know it exists.

    Love TC

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  • Ellie
    replied
    Hi Terry,

    Some Forum members have had a very hard time getting liquid Riluzole prescribed in the U.K. as it is SO much more expensive than in tablet form.

    So, yes it's available, but some people have to jump through hoops to get it

    Love Ellie.

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  • Terry
    replied
    Oral suspension of riluzole approved by FDA

    ITF Pharma has received marketing authorisation for the use of Tiglutik, a liquid form of riluzole, by people with MND in the USA. This form of riluzole is already available in the UK under the name of Teglutik, provided by Martindale Pharma, making this treatment more accessible to people with swallowing difficulties.

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