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Thread: Rch4

  1. #231
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    Hi,

    just wondering is Riluzole a drug that the specialist will put you on straight away. ? I have heard there is alot of side effects from it. I have to see the specialist in may. First time for me at the hospital clinic.
    Hope you are having a nice weekend.

    Sheila

  2. #232
    Forum Member Lynne K's Avatar
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    Sheila, people react to Rilozone differently. It makes some sick. But I don't have any side effects unless the fact that I've gone off sweet things is anything to do with it. Or that could be a coincidence. You have to avoid fat or dairy products when taking it. So, take it and eat one hour after. Or have your meal and wait until 2 hours after to take your Rilozone. As you can see meal timings are important and you have to take your Rilozone every 12 hours. Lynne
    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.

  3. #233
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    Kayleigh,

    You are correct, RCH4 is still a trial drug and needs to go to FDA trials. The 'RC Charity' who supply RCH4 to us, are trying to find sponsorship at the moment, to take it to further trials and eventually get out the the wide MND community. My wife has been on RCH4 since Feb 2016 and has halted her progress, and I know of others with the same results. This drug needs to get to trials asap, as it has no side affects unlike Riluzole and actually offers you longer term results, which is different to all the available MND drugs available at the moment, which may only give short term results.

    Also this thread is for discussion on RCH4 for people enquiring about it and feedback from the users like my wife. There might be better threads targeting good advice for Riluzole and its use / benefits elsewhere on this forum.

  4. #234
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    Thank you for your advice Lynne and Kayleigh alot to think about. I don't think I will rush into anything yet.

    love,,
    Sheila

  5. #235
    Forum Member Kayleigh's Avatar
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    Hi Marlon

    With reference to the final paragraph of your post, Riluzole was mentioned in a couple of my posts, but in no way was I trying to persuade people to use it. I was just pointing out the fact that RCH4 is not currently approved for use in the U.K. - but Riluzole is. In no way did I imply that people shouldn't be using RCH4 or that they should be using Riluzole (it is a matter of personal choice).

    As you would rather that 'Riluzole' was not mentioned at all on this thread, I have deleted my posts that mentioned it.

    I always try to do my best to offer helpful information and to be as supportive as I can on this forum. I hope that RCH4 continues to work well for your wife, and for everyone else who is using the drug.

    Best wishes,
    Kayleigh

  6. #236
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    Kayleigh,

    You did not need to delete, perhaps I worded it too harshly. What I want to say is that there may be some good advice on 'Riluzole' on other threads as most of the RCH4 users don't take 'Riluzole' and so would not be in a good position to offer advice.

  7. #237
    Forum Member Kayleigh's Avatar
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    Thank you Marlon.

    Very best wishes to you and your wife,
    Kayleigh

  8. #238
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    I go through step phases with my MND. For example - after diagnosis I went 2 years without much reduction in function. Then my right foot went quite quickly. Then another plateau for about 6 months before my left leg started giving signs of weakness. Then another plateau for about 9 months using crutches only. Then my arms went south and stayed roughly the same for 6 month for so. Then everything seemed to go downhill prior to Christmas - left hand is about it really.

    My point: MND is variable rate degradation (the bit that makes us all 'different') so I might assign 'remission' to my variable 'variable' rate.

    Since it is over 23 years now since Riluzole passed its efficacy 'tests' there is a very large gap in the market for hope of a cure.

    Kind regards

    Chas

  9. #239
    Forum Member Lynne K's Avatar
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    Thanks for your info Chas. About the length of time since Rilozone came on the market: this shows that fingers ought to be pulled out to find a more effective treatment urgently. There seems to be some positive steps being taken. Fingers crossed. Lynne
    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.

  10. #240
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    Hi Nick, how do you contact them ? They have shutdown the contact us section on the site.
    Regards Jerry

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