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Thread: Radicava (edaravone) approved by the FDA in the US

  1. #21
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    I agree this seems to offer modest effects at slowing down the progression of the disease and comes 20 years after Riluzole which has a similar effect, we are still some way off a cure but it does look as though this may be a step in the right direction. John

  2. #22
    Quote Originally Posted by John14 View Post
    I agree this seems to offer modest effects at slowing down the progression of the disease and comes 20 years after Riluzole which has a similar effect, we are still some way off a cure but it does look as though this may be a step in the right direction. John
    It is a step in the right direction.

    Consider this..

    Because of the MND disease measuring issues (ie subjective alsfrs) typically we have to run all trials with fast progressing cases. Unless the disease modifying is dramatic you just cannot see it in slow cases in a 6 to 12 month trial.

    Now if a drug shows effect on fast cases, who knows what it might do with slow or very slow cases? Depending on mechanism it could actually be significant!

    Riluzole, for example, has had no trials greater than 18 months. People have been taking it for many many years in some cases. So the 2/3 month life extension could be dramatically out for slower cases.

  3. #23
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    Onein400

    Spot on. Very good analysis of the potential of Riluzole if taken early or in slow progression.

    Charles

  4. #24
    Forum Member Ellie's Avatar
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    But progression is not linear... Not in ALS anyway. And therein lies a significant issue in the measurement of any slowdown; it is impossible to know how anyone's ALS will/would have progressed anyway.

    I was deemed to have relatively fast progression for my first 12 months, losing more than half of the possible 48 points on the ALSFRS-R scale 12 months after diagnosis (Definite ALS diagnosis) I lost 9pts during my first 6mos and 16pts during my second 6mos.

    Year 1 - lost 25 points.
    Years 2 - 10 - lost 14 points in total.
    Current ALSFRS-R score is 9 points.

    Ellie.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

  5. #25
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    Thanks Ellie:

    The voice of experience and reason.
    We (I) are clutching at straws trying to predict and thus gain a modicum of control over this disease. But truth be told it has a whimsical mind of its own.

    Charles

  6. #26
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    While researching Edaravone (Radicava) I ran across the following link that does a side-by-side comparison between it and Riluzole and something called are RCH4. First, I would love any thoughts with regard to this comparison. Additionally, any information about RCH4 would be very helpful. http://www.als-new-drug.com/riluzole-edaravone-rch4

  7. #27
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    Hi Just Me

    Who is providing the RCH4 drug for compassion use ?? Has there been studies done on it, and what were the results ?

    CCxx
    .

  8. #28
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    Quote Originally Posted by ccinjersey View Post
    Hi Just Me

    Who is providing the RCH4 drug for compassion use ?? Has there been studies done on it, and what were the results ?

    CCxx

    Those are great questions. I would really like to know. That is one of the reasons I posted this here. I'm hoping someone on the forum might have that information.

    Michael

  9. #29
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    I did a little more research about this. And, I ran across this link. It's on a website called patientslikeme.

  10. #30
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    A cursory look at this and several things stand out:
    1. There are minimal, if at all, side-effects.
    2. All report significant benefits.
    3. It is very easy to take.
    4. It is not expensive (this point confuses me. Is this because it is a subsidized trial?)

    Given this info I would be very keen to get onto this. cost would be the prohibitive factor.
    It appears that it slows progression down.

    Charles

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