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Thread: Rch4

  1. #381
    Forum Member Ellie's Avatar
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    ALSUntangled has published their review of RCH4.

    https://www.tandfonline.com/doi/pdf/...eedAccess=true
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

  2. #382
    Forum Member Terry's Avatar
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    Thanks for the link Ellie;

    Their report is very short, probably due to them not obtaining much if any info from Rch4.

    The report does say:- The website does mention some side effects in patients on RCH4 that
    were later determined to be due to “counterfeit edaravone” (6). Exactly what these side effects
    were, or how this determination of causality was made are not specified. Of concern, one website
    mentions 2 cases of anaphylaxis on RCH4, one of whom died

    And the conclusion:- Conclusion
    RCH4 is an unlicensed, unapproved product
    reported to “probably slow the progression of your
    ALS” (6) on a website. The only peer reviewed
    publication we found on this product is a single
    abstract which was never presented at a meeting.
    We have been unable to determine RCH4’s structure or chemical class, and its purported mechanism is one that has never been shown to be useful
    in treating PALS before. We have been unable to
    independently verify RCH4’s reported efficacy or
    even safety. Thus, at this time, we cannot advise
    PALS to use this product. We hope the proponents of RCH4 will someday present more useful
    information about their product at a scientific
    meeting or in a peer reviewed publication.
    We believe that regulatory oversight is important for optimizing patient safety on experimental
    drugs, and that independent peer review and replication are fundamentals of good science. Caution
    should be exercised around any product being
    developed and in clinical use without these safeguards and fundamentals in place.

    It appears that they've found out pretty much what we know and explain a few other things. So they're in the dark as much as we are.

    I hope I scanned it correctly.

    Love Terry

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