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Thread: Experiences with Rilutek

  1. #71
    Forum Member G60dubber's Avatar
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    Ian, I suffered a constant cough for months the same a you describe whilst on it. Since stopping the cough has gone...
    Life without love is like a broken pencil..... Pointless.

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  2. #72
    Vane
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    Hi there, I have recently starting to get a tickle in the top part of my throat which makes me cough (my cough is pathetic and very weak).
    Im not sure if this is the beginning of a swallowing problem or something else (such as your problem Ian) but its certainly new - I take 50mg riluzole each day (had to reduce down from 100mg as it made me feel dreadful). I also seem to have developed a loud buzzing in my ears which is continuous.and its driving me absolutely mental - unsure whether this is a build up of mucus because of weak coughing muscles????
    Does anyone have any of these symptoms? vanessa

  3. #73
    Forum Member G60dubber's Avatar
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    My cough was really weak and I too had the same concern that my resp muscles were shot. Since stopping rilutek all seems fine and was good for blowing up balloons for daughters birthday party. Would seriously recomend balloon blowing as aerobic exercise once mobility decreases.
    Life without love is like a broken pencil..... Pointless.

    http://mndestroyer.wordpress.com/

  4. #74
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    Hi all,
    Still not taking Rilutek but have seen a very nice, lady neurologist, through the Spanish Health Service. The neurologist said she required another, up to date emg report, she would ask for it to be arranged urgently and an appointment with a physiotherapist. She also said I would get a prescription for Rilutek.

    That was 31 May, to date I have seen the physio. but no appointment yet for the emg.

    So plan B, I have an appointment with the original neurologist, through our insurance scheme, July 26th, when I will tell him what has happened since our last meeting earlier this year. He will assume I am still taking Rilutek. I will explain my decision to stop taking Rilutek and because of the cost would taking half dose be beneficial. In the meantime I will ask the Denia neurologist if I provide an up to date emg report would she accept it. If that's OK I may be able to get the insurance company to fund the emg.

    I know the tale is complicated but if I can get Rilutek on the National Health I will resume taking it.

    Michael

  5. #75
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    Hi John,I have just been diagnosed last week with ALS and have been taking Rilutek for 5 days, if I notice any changes I will let you know. The experts at the Care Centres would advise you to take Vitamins if they thought they thought they would benefit you.I agree with you ,nothing to lose but their are ruthless people out there who are just trying to make money out of people in our position

  6. #76
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    Hey
    i am from India.. my mom is taking riluzole alone with thyrofit,rabee, remylin,vernace tabs - it is good combination pls advice

  7. #77
    Forum Member Robert's Avatar
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    Hi Computatec,I'm Bob although my forum name is Robert.I joined May 2011 diagnosed March 2011 age 63, I reckon I first noticed a change in myself 21months ago.Anyway perhaps you can answer some questions I have about Rilutek,I am a bit apprehensive about taking it as I feel perhaps I should wait until my condition worsens such as when I get breathing problems.I take curcumin which I am told is the natural equivalent of rilatek which is chemically formulated.I have just started taking B12 as I read on the web that it can balance the glutamate in the brain which it seems is a major contributer to MND.You are my first contact other than my introduction . I have read other threads but you seem to have read up a bit about it so thats why I am contacting you,hope you don't mind. Kind Regards Bob.

  8. #78
    Forum Member computatec's Avatar
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    Hi Robert,

    I think all neurologists offer patients Rilutek as it is the only drug licenced for MND. The manufacturers claim it is best started as soon as possible after diagnosis, but many of us have the disease a year or more before it is diagnosed. Some patients have side effects and don't continue with it, while others take it without any problems. The drug does not have any beneficial effect on any of the problems we have to endure as the disease progresses but it is cliamed it may extend survival by three months. I took Rilutek for seven months without aparent problems and then developed a dry mouth and a cough which stopped when I stopped taking the drug. My neurologist felt the possible benefit was not worth the misery of the side effects so I am now off it altogehter. Each of us has to make thier own decision about Rilutek and the experience of other patients is not much help. I am interested in your information about circumin and glutamate production so please post any links you have to this.

    Vitamin B12 is good for your mental state and is worth taking. I take Vitamin E Complex (Mixed tocopherols) Ubiquinol (a better from of co enzyme q10) and I have recentlly started Olive Leaf extract, a natural anti bacterial as a prophylactic against infections in throat and chest.

    Clive
    Living with MND. There is a solution to every problem - never ever give up.

  9. #79
    Forum Member Robert's Avatar
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    Hi Clive,the site I looked at about excess glutamate is www.dana.org in search box put protecting the brain from a glutamate storm then click on 3rd link down.
    There's 6 pages of interesting reading including the brain blood barrier that I think you're familiar with.I am taking vit B12 as I read that this could be the key to removing the excess glutamate from the brain through the brain blood barrier and into the body's blood stream then being dispersed through natural outlets.We shall see! Regards Bob.

  10. #80
    Forum Member Robert's Avatar
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    Sorry Clive forgot about the curcumin it is an extract of tumeric its a bit expensive as i could only find one supplier and all others just supply tumeric which has only 2% curcumin I am told it does the same as rilutek only naturally.We shall see! Regs Bob

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