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Thread: riluzole - updated research

  1. #11
    Forum Member Lynne K's Avatar
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    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; 14th August 2019 at 20:58.
    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.

  2. #12
    Forum Member nunhead_man's Avatar
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    Good afternoon all

    Quote 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
    Warmly


    Andy

    ​Diagnosed 03/2015. Limb onset (arm) sporadic ALS/MND.
    MND hitting - now 50% left arm a 90% right arm, plus other bits including left shoulder

  3. #13
    Forum Member Ellie's Avatar
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    Quote 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

    Quote 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.

  4. #14
    Forum Member Puddy's Avatar
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    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




    Husband, Nigel, diagnosed with ALS in July 2019. We live in Spain and the medical care is superb. Nigel currently taking Riluzole. Tried acupuncture/Chinese medicine and bee venom (privately), but not helpful.

  5. #15
    Forum Member Kayleigh's Avatar
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    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; 15th August 2019 at 16:57.

  6. #16
    Forum Member nunhead_man's Avatar
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    Hi Ellie

    Quote 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
    Warmly


    Andy

    ​Diagnosed 03/2015. Limb onset (arm) sporadic ALS/MND.
    MND hitting - now 50% left arm a 90% right arm, plus other bits including left shoulder

  7. #17
    Forum Member nunhead_man's Avatar
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    Good morning Puddy

    Quote 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
    Warmly


    Andy

    ​Diagnosed 03/2015. Limb onset (arm) sporadic ALS/MND.
    MND hitting - now 50% left arm a 90% right arm, plus other bits including left shoulder

  8. #18
    Forum Member Ellie's Avatar
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    No, IDK is I Don't Know.

    Get with it Andy

  9. #19
    Forum Member Ellie's Avatar
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    Puddy's recent thread on Apitherapy is here:

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

  10. #20
    Forum Member Kayleigh's Avatar
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    Quote 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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