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  • Riluzole more effective with complementary therapies such as Radicava, study sug

    Posted by ardi on September 18, 2019 at 3:14 am

    <pre id=”tw-target-text” class=”tw-data-text tw-text-large tw-ta” dir=”ltr” data-placeholder=”Übersetzung”><span lang=”en” tabindex=”0″>Did I understand correctly that Riluzol has no positive effects on sod1? does that mean for sod1 Family ALS Riluzol does not help?</span>

    Dagmar replied 4 years, 4 months ago 4 Members · 7 Replies
  • 7 Replies
  • Dagmar

    Member
    September 18, 2019 at 4:43 pm

    That’s what it sounds like to me:

    “Researchers next evaluated cells that had been genetically modified to have familial ALS related to the G93A mutation in the SOD1 gene. These particular cells produced twice the amount of ROS compared to non-modified cells.

    Interestingly, riluzole treatment prevented cell death and partly abolished the increased ROS levels in the non-modified cells, but was ineffective in reversing ROS effects in cells carrying the G93A SOD1 mutation.

    This lack of efficacy in cells with the SOD1 mutation is in line with results in an ALS mouse model and is likely due to differences in the underlying disease-related processes.”

  • Amanda

    Member
    September 18, 2019 at 9:34 pm

    I do think you are right, and Riluzole isn’t beneficial for ALS caused by the SOD1 mutation.

    My family has the SOD1 mutation as I’ve mentioned before. In the past, family members with ALS were prescribed Riluzole; however, my cousin who was more recently diagnosed, is being treated with infusions which I believe is Radicava

    I was reading over different websites and articles related to ALS treatments. I was looking specifically for information regarding treating inherited ALS by specific genetic mutations.  I know there are some studies in progress that are in clinical trials specifically targeting/treating ALS caused by the SOD1 and C9 mutations.

  • ardi

    Member
    September 19, 2019 at 8:56 am

    <pre id=”tw-target-text” class=”tw-data-text tw-text-large tw-ta” dir=”ltr” data-placeholder=”Übersetzung”><span lang=”en” tabindex=”0″>my father has sod1 too. that means he has to stop with riluzole. yes only side effect if no positive effect on sod1 has! all this time for nothing this riluzol taken! I thought but before riluzol was for sale was tested on mice with sod1 like all other drugs?</span>

  • Deleted User

    Deleted User
    October 13, 2019 at 12:09 pm

    I believe this article represents an ad for Radicava.  I think Radicava may be of some limited benefit based on the short clinical trial using recently diagnosed participants, which tells you nothing about what it may do for people living with ALS  for 5, 10, or more years. It’s a one size fits all approach.  The manufacturer admits people who use it probably won’t notice any difference in their ability to function.  Therefor, who knows (or who believes?) it has any effect.  Just because Pharma says it is doesn’t make it so.  For all I know, using my anti-oxidants daily may benefit me more than a synthetic molecule researchers developed for a profit.  Call me a skeptic.  I refuse to go through a lengthy infusion regimen for something that may not be of much, if any benefit.

  • Dagmar

    Member
    October 13, 2019 at 4:35 pm

    I agree with you Walter. Given the short clinical trial, limited to ALS patient in 1-3 years and the quick push to have it approved… the real time/real world results are not totally positive. I think the ALS community was so desperate to have something approved, that Radicava got in.

    The intensive infusion schedule (and cost) is also not an easy sell.

  • Deleted User

    Deleted User
    October 15, 2019 at 4:30 pm

    Dagmar, my attitude is unless it will be of significant benefit to me with no dangerous side-effects, I will not use it.  I once considered the DPS which has been proven to be worthless in 2 independent studies from reputable sources.  Acthar gel is another candidate that has disappeared, thankfully.  I read up on that one a few years ago and decided if it was made available, I wouldn’t use it because it is too dangerous.  PALS need to make themselves aware of these issues, and because the FDA approves it does not mean you should use it.  No one should be made worse-off from a treatment.  There is an MS drug now being considered for ALS.  If you discontinue it, it may leave you totally bed bound, or have other major negative mobility effects.  Which reminds me, Radicava causes gait-disturbance problems.  I have never seen the details of that.  Now, I am able to do limited walks at home thanks to AFO’s that a wonderful young lady designed for me.

  • Dagmar

    Member
    October 15, 2019 at 4:35 pm

    I agree with you Walter – – due to the nature of ALS, treatments should be individualized for each patient.

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