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    • #22382
      Paul Kokott
      Participant

      Ten months ago I was diagnosed with having ALS, I also have COPD. I’ve been going to the Froedtert ALS Center in Milwaukee, since my diagnosis. I’ve had to make many changes, such as living alone to living with my family, walking unassisted, to using a cane, and now a walker. I’ve made peace with myself, and have accepted that I have this horrible disease. Just recently my Doctor put me on the new Radicava ORS drug. I finished taking the starter kit (14 continuous days), and noticed some things changed in my health, while taking the drug. I can no longer use a cane, and my walker is difficult at times for me. I went from being short of breath after exerting myself, to being out of breath just sitting in my recliner. Has anyone else experienced these things? Do they get better after I get used to the drug? Do the side effects disappear in between the dosing regiments? Thanks in advance for your input.

    • #22395
      Richard Maloon
      Participant

      I was diagnosed with ALS about 2 years ago and immediately put on riluzole.  A week ago my ALS doctor and I decided to add Radicava ORS.   My present ALSFR is 43. I do breathing exercises that help. I have lost control in my left hand and about 50 plus loss in my right. I still drive but have a hard time getting in my truck. I use a “suicide knob”. I bought an electric scooter. Most ALS patients have a respiratory failure within 3 to 5 years. My doctor does not expect a reversal of symptoms no matter what. The best I can expect is I decline less rapidly.  Look for “Dagmar” on this forum. I believe she is a 10-year survivor.

      If approved, I could start taking both drugs by mid-August. I am a patient only.

      Richard

    • #22397
      AA20
      Participant

      What kind of exercises do you do Richard?

      • #22404
        Paul Kokott
        Participant

        Good luck to you Robert. I too am on Rilzole.

    • #22398
      Robert
      Participant

      I am going to start radacava next week. I am presently on riluzole. At this point I am willing to try anything. I have been getting worst.

    • #22400
      Sandy
      Participant

      I have been on Radicava over four years with no side effects. Still able walk with rollator, eat and talk. Slow progression. Thank goodness. So I would say it a try.

      • #22405
        Paul Kokott
        Participant

        Thank you Sandy. I’m going to continue to take. Hopefully the side effects will taper off.

    • #22420
      Richard Maloon
      Participant

      the only exercise I do is for my lungs, and I simply breathe in deeply expanding my stomach and exhale while puckering my lips to make it “hard” to expel the air. 25 times 4-8 times per day. You can buy a device where you can measure the pressure, but this has worked okay for a couple of years.  I will try riluzole and radicava simultaneously if things go as expected in a couple of weeks.  why not do both? My health plan pays for riluzole. I move like a sloth, no pain can’t do ordinary tasks. slow progress to date. lots of l -serine. that is my story. research end-of-life alternatives.

       

      r

       

      • This reply was modified 2 months ago by Richard Maloon. Reason: Grammarly
    • #22454
      Bill Osullivan
      Participant

      Hello, I am new to the forum however not new to ALS. Unfortunately our family has the familia version of ALS so I know the progression and outcome only too well. First symptoms 3 years ago when diagnosed doctor put me on Riluzole and daily anti-oxidant cocktail of several over the counter items. Not sure if this is something others are doing. I can share the list if needed.   I started Radicava ORS on Wed two days ago, so far so good. Watching for anticipated FDA approval of AMX0035 a plan to add that to my drug list.

    • #22626
      Susana Rave
      Participant

      I was diagnosed 3 years ago and right away was prescribed Riluzole.  Last Saturday I started Radicava ORS and have tolerated it well so far.  According to the pharmacist who I spoke with prior to taking the Radicava said the side effects could be headaches, fatigue and bruising easily.  I have not experienced any of these so far but I am only on day 5.  Hopefully, this medication slows my progression further.  Currently, I walk with a walker, and can still take care of myself – showering, dressing, light cooking, although my hands a weakening.

      I am also taking 1000mg of Tudca, one of the elements in AMX0035.

    • #22637
      john hamilton
      Participant

      Just completed the first 14-days of Radicava doses. Ugh! Tastes like gasoline! No apparent side effects…well, maybe my walking’s a bit more wobbly. I’ve got the bulbar-onset version of ALS and have rapidly lost my ability to speak legibly. Just as well, for some, I suppose. Was 206, now, a year later, 176, but not ready to get PEG’d yet. Oh, and I’m taking 2 gms a day of TUDCA (synthetic bear bile, I read), and of course the Riluzole.

      My spirits are still pretty good. Had a good life. And being 81, I’m just just glad to still be kicking. I could moan about not being able to do road-bicycling now, or take nice long walks in the woods, or no longer able to do push-ups, but I won’t.

      Coincidence, I’m sure, right? But seems strange how I developed ALS symptoms shortly after having a mild case of COVID. Anyone else?

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