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    • #18501
      SILVIA ARG
      Participant

      what about edaravone. it has good or any benefit results?

    • #18531
      Anonymous
      Inactive

      Started Radacava/Edaravone 3 March. Still to soon to say anything. Recent publications say it helps though. See ALS News Today article:
      <h1 class=”entry-title”>Early Use of Radicava Seen to Lower Cumulative Risk of ALS Progression</h1>

    • #18550

      My husband just started the first round of a 14-day treatment.  He stated the first few days have resulted in him feeling better about his short-term memory loss.  He also felt like he was able to walk better, especially in the morning hours.  We will complete the first round this Sunday.  I say we because I am giving him infusions at home.  Keeping our fingers crossed.

    • #18552
      Carolyn Barry
      Participant

      I started Radacava infusions at a clinic, at the end of December 2020.  My difficulty walking and with balance, which has existed since February 2020, has worsened some, but not a great amount.  I still feel extremely tired everyday, no matter how much sleep I get at night.  This does seem to be worse as time has passed.  It’s impossible to know if these changes would be worse if I wasn’t on Radacava, so at least at this point,  I’m still wanting to stay on it, hoping it is slowing the progression.

    • #18555
      Anonymous
      Inactive

      I get the tired also.

      Got a port installed Monday. The surgeon/radiologist was good, went in painlessly (until the Novocain wore off). Now its just a matter of days before I can use it. Save my veins!

    • #18560
      Marianne Opilla
      Participant

      I have been on home edaravone infusions since July, 2020.  10 days per month.  I do my own infusions.  I have steadily progressed since then,  but can’t say whether I would be worse if I wasn’t on it.  So, I continue to infuse. I believe something is better than nothing.  No side effects. I do notice maybe some less fatigue with the cycle.

      I am also in the platform trial but it is blinded to actual drug or placebo.

    • #18582
      Cindy
      Participant

      Was on Edavarone from 11/17-3/21. I thought it was effective in slowing progression. I think I’ve outlived it’s effectiveness. Progressing more rapidly once diaphragm has been affected by disease.

      • #18605
        Dagmar Munn
        Keymaster

        Cindy – – so sorry to hear this. Have you been doing any breathing exercises? Both while sitting and standing?

    • #18598
      Christine Moretti
      Participant

      I have been on Radicava since October 2017. Since the pandemic, I have been fortunate to do them at home now. I feel as though Radicava has been helpful in my slow progression so far, fingers crossed. In 2016, I was diagnosed with PLS. I do not know if Radicava is more beneficial for PLS patients. For example, does it work more efficiently on UMN? I fervently hope that effective treatments emerge for all of us.

    • #18656
      Anonymous
      Inactive

      PLS is an ALS Variant, no? I understood that a high percentage of PLS diagnosed patients eventually develop ALS. UMN vs LMN variants are all under the ALS umbrella.

      Everyone is different. ALS has variations also. A few links to study up on :
      https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4629514/
      and:
      https://clinicalimagingscience.org/amyotrophic-lateral…/

    • #18744
      Anonymous
      Inactive

      Study on the efficacy of oral Edaravone looks good! If this works, no more infusions!

      Bioequivalence Study of Oral Suspension and Intravenous Formulation of Edaravone in Healthy Adult Subjects

    • #19757
      Shawn
      Participant

      I was fairly recently diagnosed (12.20), limb onset mostly left non-dominant hand, and have been deemed a slow progressor by my docs at Penn and MGH. I credit at least some of the slow progression to my therapeutic plan.

      I started Radacava in February 2021. I have not experienced any significant side effects, maybe some tingling in left leg initially but that was only present mid-infusion cycle and disappeared after first couple cycles.

      My progression has remained slow. Modest loss of arm/hand strength and slight saliva and maybe speech. I notice I feel my best (less fatigued, crampy & twitchy) just past the end of my infusion cycle then decline somewhat until next round of infusions.

      I had a port installed after successful first course. The procedure was uneventful (coordinated by my Penn Medicine ALS Team) with quick recovery. The port works great–my home infusion nurse comes to access me each Monday of my 2-week course and I self-infuse M-F and deaccess myself for a un-plumbed weekend.

      The whole infusion thing seemed daunting before starting but is really no big deal at all once adjusted after 1-2 cycles. I highly recommend a port and home infusion. E-Z.

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