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Thread: Rilutek

  1. #1
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    Rilutek

    Hi All,

    I have just read an article stating Rilutek only slows down the progession at the later stages of this disease, ( getting close to the dying phase) so I ask myself and forum members if it is worth the trade of, ie the side effects of fatigue etc. when you are in the early stages and still able to get around ?

    Another question, having looked into Deanna Protocol regime, is the extremely high price for this product regime beneficial or sustainable long term ? I ask this knowing probably very few people have tried it, I am just so desperate to try anything, I guess all of us are willing to try and find someway of slowing this crap down.

    Regards to all of you,
    John

  2. #2
    Hi John

    I was prescribed Rilutek at diagnosis.

    You are right that it only slows down the progression a little - by affecting the action of glutamate at synapses, I believe. But it can have this useful effect at all stages.

    I find no adverse side effects and am still fairly mobile at the moment. You will need to have monthly then three monthly blood tests because it can affect liver function. They measure the ALT (alanine transaminase) level. This is a liver enzyme that can be raised by heavy drinking and some drugs. Rilutek will raise it a little but my Consultant says we only need worry if it gets to three times the normal level. Mine is nowhere near that high.

    I don't know anything about the Deanna Protocol.

    Best regards

    Doug

  3. #3
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    Hi Doug,
    Thanks for your reply, I take CBD oil (no THC) don’t know if it does any good, only time will tell, I’m not a rich man but I could afford the DP plan if I thought it would do me some good and buy me some time, as for the alcohol I have a few beers/wines, as you probably know it’s a depressant so it’s a bit of a trade of, it takes the edge of slightly at the time but pay for it next day.
    I have a DNR in place and intend to refuse feeding tube if and when the time comes, my GP has assured me I will get palliative care, I am sorry I can’t write anything positive here Doug other than enjoy you current mobility, I should be telling myself that but this disease has totally depressed me and is in my head 24/7.

    Best wishes Doug,
    John.

  4. #4
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    My daughter 33 has been doing the Deanna protocol for 3 months now and reports she is not so tired but we’re not so convinced that it is stopping progression we are continuing with it as like you say we will try anything as her children are 8yrs and 11 months old.

  5. #5
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    Hi Jaxx,
    I’m in correspondence with the provider of DP, still not sure what to think, but if it is giving your daughter more energy then maybe it’s worth a try, I feel so sad for your family, my son is 21 now but he is taking it real bad, none of us deserve this evil disease.
    Lots of love to you and your family.
    John

  6. #6
    Forum Member nunhead_man's Avatar
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    Hi John

    I too was prescribed Rilutek at diagnosis and have no adverse side effects (blood tests clear etc) but am still fairly mobile at the moment.

    I've been looking at the Deanna Protocol but partly as I'm already teetotal and vegetarian tending to vegan I cannot see it is going to help me.

    Best wishes

    Andy
    Andy

    ​Diagnosed 03/2015. Limb onset (arm) sporadic ALS/MND.

  7. #7
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    Hi Andy,
    I have a few beers now and again, I’ve eaten quite healthy over the years, but I must say my diet has not been the best since diagnosis, live on my own so been eating out a lot and generally diet is not good, there is so much contradiction as to what a suitable MND diet should be it’s the same with the correct supplements, If this DP plan is simply a concoction of vitamins then it is overpriced, there seems to be no great deal of feedback or positive reviews on here, I would try anything but don’t like being ripped of because I am ill, any suggestions Andy in regards to diet and supplements.

    Cheers mate,
    John

  8. #8
    Forum Member nunhead_man's Avatar
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    Hi John,

    I'm sorry to hear that you live by yourself - I know living alone does not mean lonely - but if you are then I'm sure the local MND community would be welcoming to you as they have been to me.

    I'm not sure I can help very much on the diet front - vegetarian vegan does not necessarily mean healthy because for example Mars bars are both!

    I suppose where I am is that because there is so much of this disease around and some people are really desperate (as I am sometimes) then snake oil people abound. And I guess I think the day Deanna Protocol heads towards this description although perhaps it may give me a bit more energy perhaps and will not do me any harm.

    Warmly,

    Andy
    Andy

    ​Diagnosed 03/2015. Limb onset (arm) sporadic ALS/MND.

  9. #9
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    Thanks Andy,
    I think I will just continue taking the CBD oil I’ve been on and try and research some supplements, what we all need is a miracle,

    Kind regards,
    John

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