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Thread: Rch4

  1. #11
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    Folks:
    This RCH4 post thread is frustrating me no end.
    Marlon reports good results. It sounds promising. I would give it a try for 6 months.
    But he is in Australia.
    Is there anyone out there on the forum who is in the UK and had managed to access RCH4?
    If so please reply.

    Charles

  2. #12
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    I agree Charles. The whole RCH4 scenario is cloak and dagger stuff. The company isn't prepared to put its head above the parapet which, to me, rings alarm bells.

    Have you filled out the form on their "Contact Us" page?

    Ellie x. (Hope you're doing well)
    ​Diagnosed 03/2007. Limb onset (arm) sporadic ALS/MND.

  3. #13
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    Hello Don
    I would be very interested to learn more about RCH4. Where do you live? How did you obtain this drug originally? Please give more details.

    Many thanks

    Ann

  4. #14
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    Hello Charles
    I have been researching RCH4 and am getting confused.
    Have you discovered any more about it? It appears that the Charity offering it has collapsed.
    I would certainly like to know more about it and would certainly give it a go, as there seems to be nothing else on offer.

    Ann

  5. #15
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    Hello Ellie

    I completed the form on the "Contact Us" page last night. I will let the Forum know if I receive a reply. I agree RCH4 is a bit of a mystery. It appears that there is a dispute going on and possible legal case in progress.

    It is frustrating when you hear that someone has found a drug helpful and then there is no more information.

    I enjoy reading your posts. You obviously have great tenacity!

    Take care

    Ann X

  6. #16
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    Thanks Ellie. Agreed. Cloak and dagger indeed. Makes Zorro look transparent.

    I am in showroom condition. Just wont mention what kind of showroom. Thanks for asking.

    Charles

  7. #17
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    Sep 2017
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    To those who are interested

    I completed the contact form on the Rch4 website last night and received a reply today together with a further application to complete. They are very frank in their reply that it does not work for everyone and its success rate is based on an analysis of the monthly data they receive from its users. They do not ask for any money at all and describe themselves as aCharity but with little funds theyand cannot help everyone so are selective as to whom they offer help.They do required your own doctor or Consultant to agree to the use of the drug.
    If accepted the drug is sent in bulk and stored in the home freezer and is self-administered twice a week in the same way that diabetics inject themselves.

    I intend discussing the matter fully with my Consultant next month before making any decision.

    Hope this information makes things a little clearer for those who are interested. There are also a number of videos on You Tube which explain, what is in effect, a Drug Trial for Rch4.

    Ann

  8. #18
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    Thanks Ann.

    Keep us posted.

    Ellie x.
    ​Diagnosed 03/2007. Limb onset (arm) sporadic ALS/MND.

  9. #19
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    My Consultant did not know much about Rch4 but advised me against agreeing to try a drug from overseas where the contents are unknown and has had no properly conducted trials, It sounded too good to be true so probably is.

  10. #20
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    May 2017
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    Annb,
    My consultant had not heard of RCH4 and many still have not. I find it strange that leading Neuros don't check places like the forums in case people are having reversals or stumble across things that help.
    With my wife having Familiar ALS we new already what was coming after she had already lost 2 sisters and her mother to the disease, so we thought there was nothing to loose, as we could find no other treatment that could work (loads of claims of different drugs with high price tags).
    We are in Australia and so in another country from supply, so were also very nervous.
    The supplier was very informative and dosage rates were very low to test for reactions before the dose ramped up.
    My wife had no side affects at all!
    All we had was positive results and my wife is still alive at an ALSFR-S score of 43 after 2 years. All her relatives died within 18 months from aggressive SOD1 ALS. My wife is also an identical triplet and the geneticist warned my wife that she would most probably follow the same timeline.
    If you need any info let me know
    Thanks
    Marlon

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