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riluzole - updated research

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  • Kayleigh
    replied
    Hi Ellie,

    When I joined the forum I realised how behind the times I must be - not being up-to-date with text abbreviations etc. - I think I should get some tuition from the teenagers in my family!

    Love,
    Kayleigh x

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  • Ellie
    replied
    Kayleigh, my kids are teenagers so I use abbreviations a lot - text acronyms and abbreviations are very useful for eye gaze users and for those with limited hand function

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  • Kayleigh
    replied
    Originally posted by Ellie View Post
    No, IDK is I Don't Know.
    It's taken a while for me to get used to these abbreviations - and when I first read IDK, LMAO and MIL on the forum, I had to Google what they meant. Thought that MIL might be 'Most Irritating Lady' but I found out my guess wasn't an accurate one! (although it might be applicable in some cases! LOL )

    Love
    Kayleigh x

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  • Ellie
    replied
    Puddy's recent thread on Apitherapy is here:

    http://forum.mndassociation.org/show...ighlight=venom

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  • Ellie
    replied
    No, IDK is I Don't Know.

    Get with it Andy

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  • nunhead_man
    replied
    Good morning Puddy

    Originally posted by Puddy View Post
    The apitherapy (bee venom) itched like mad
    I know I am off thread, but what is this apitherapy?

    It does not get a very good write up here; https://en.wikipedia.org/wiki/Apitherapy

    Warmly

    Warmly

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  • nunhead_man
    replied
    Hi Ellie

    Originally posted by Ellie View Post
    In theory it could affect its absorption if the drug is designed to be absorbed through the stomach mucosa....IDK ....... way above my pay grade
    Thank you - assume IDK should be IDNK , meaning I do not know?

    I do try to swallow the bloody things but occasionally when I am, dozy at 6 AM I try to swallow with too little water with the predictable result.

    And I could not find achy joints as a "undesirable effect" either , but wondering I would miss something as I did about the effect of caffeine where it increases absorption in the gut

    Warmly

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  • Kayleigh
    replied
    Hi Lesley,

    Good to hear there's no problem with Nigel swallowing the tablets. My local pharmacy doesn't usually have Riluzole in stock, but they order it for me and usually it only takes a few days to arrive from receiving the repeat prescription from my GP.

    Sorry to hear that Nigel's skin is itchy due to the apitherapy. I think you are sensible to keep an eye on it. It might not be something that will clear up by itself and so perhaps see if Nigel's doctor can take a look. His doctor might prescribe some medication to clear up any skin infection and stop it feeling itchy.

    No rain here today (yippee!) - it's been a good day for getting my washing dry, as it's breezy with some sunshine (but definitely not as hot as in Spain!)

    I hope Nigel's skin stops itching soon.

    Best wishes to you both,

    Kayleigh x
    Last edited by Kayleigh; 15 August 2019, 16:57.

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  • Puddy
    replied
    Hi Kayleigh - it's absolutely baking here! Nigel's not having any problems taking his tablets. The apitherapy (bee venom) itched like mad and he's scratched them. Now he has a 'trail' which I'm a bit worried about. I'll keep an eye on it. Funny (kind of) but we can only obtain the Riluzol from the hospital pharmacy. I went ther today to pick some up and the hospital was closed! It's a 'red' day in Spain, one of their many fiestas!! Thanks for your reply, take care, Lesley xx

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  • Ellie
    replied
    Originally posted by nunhead_man View Post

    I have no idea if it does dissolve in my mouth if it affects the efficacy.
    In theory it could affect its absorption if the drug is designed to be absorbed through the stomach mucosa. The tongue, buccal areas (cheek) and sublingual areas are very effective absorbers but IDK what difference, if any, an acidic-loving (?? as in made for GI absorption) drug absorbed into plasma via the mouth may have - way above my pay grade

    Originally posted by nunhead_man View Post
    Also, I have had no obvious side effects, although I was wondering if joint pain was one of those?
    It's not listed an "undesirable effect"....

    Love Ellie.

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  • nunhead_man
    replied
    Good afternoon all

    Originally posted by Lynne K View Post
    Hi Kayleigh, same here. I've only had the Sun Pharma Rilozone once - months worth
    I had the Sun Pharma stuff originally and then was told I could only get the Glentek stuff.

    I had a hunt round all the different pharmacy chains locally and none of them could provide the Sun Pharma version.

    I have had a poke around and cannot find anywhere to buy privately.

    My experience chimes with that above is that the latter is not very well formulated and dissolves on my tongue, if I am not careful to swallow it immediately.

    I have no idea if it does dissolve in my mouth if it affects the efficacy.

    Also, I have had no obvious side effects, although I was wondering if joint pain was one of those?

    Warmly

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  • Lynne K
    replied
    Hi Kayleigh, same here. I've only had the Sun Pharma Rilozone once - months worth. The Rilutek is given to me mostly. I sometimes struggle with Rilutek/Glentec because they sticks behind my teeth or elsewhere in my mouth. The Sun Pharma ones never did. Hopefully our supplies after Brexit will be uninterrupted. Lynne
    Last edited by Lynne K; 14 August 2019, 20:58.

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  • Kayleigh
    replied
    Hi Puddy,

    Greetings from rainy England!

    I find the SUN brand tablets have a better coating on them compared to other brands like Glentek (I don't find the Glentek brand easy to swallow before they start dissolving).

    I hope Nigel finds the Sun tablets are ok for him to swallow easily. (For anyone unable to swallow tablets, Riluzole is also available in liquid form.)

    How are you both in sunny Spain? Weather here in England today is rather dull - lots of non-stop rain for most of the day (typical British Summer! LOL).

    Love and best wishes to you and Nigel,
    Kayleigh xx
    Last edited by Kayleigh; 14 August 2019, 19:23.

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  • Puddy
    replied
    Originally posted by Ellie View Post
    Hi Puddy,

    If riluzole dissolves on the tongue, it can cause numbness and taste unpleasant too.

    It doesn't lessen its efficacy but if the tongue is numb, it may be bitten.

    So, not as much of a medicinal importance, more of a potential yuck or ouch !!

    Oh, and it's best taken on an empty stomach - if it causes Nigel a bit of nausea, it's OK to eat a few crackers or plain biscuits with it.

    Love Ellie.
    Originally posted by Terry View Post
    Hi Puddy,

    It has lots of unpleasant things and can make you feel funny, light headed and sick. This is just my opinion but I strongly believe that many of the people that have problems with it is because it starts to dissolve. Some brands dissolve quicker that others and I was told to take it with a bit of yogurt if needed.

    What brand do you have?

    Love Terry
    Nige has Riluzol SUN 50mg. It may be a Spanish 'make'. Thanks both.

    Leave a comment:


  • Terry
    replied
    Hi Puddy,

    It has lots of unpleasant things and can make you feel funny, light headed and sick. This is just my opinion but I strongly believe that many of the people that have problems with it is because it starts to dissolve. Some brands dissolve quicker that others and I was told to take it with a bit of yogurt if needed.

    What brand do you have?

    Love Terry

    Leave a comment:

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