Lambert-Eaton News Forums Forums Treating LEMS Firdapse and Ruzurgi (Amifampridine) The Case For Time Release Firdapse

  • The Case For Time Release Firdapse

    Posted by price-wooldridge on March 31, 2021 at 1:10 pm

    This is exciting news that Catalyst Pharmaceuticals is working towards a time release version of Firdapse, the only FDA approved drug for adults with LEMS. Currently it’s only available as 10 MG tablets, with most patients dosing at 2 to 4 hour intervals. In my case I take my dose every 4 hours. That’s quite a schedule when you consider how busy a daily routine can be! And occasionally I am late with a dose and have to slide doses the remainder of the day. Oh, and my last dose is usually around 8 PM, so my Firdapse coverage tapers off somewhere around midnight, until the next morning dose. Time release Firdapse could be a game changer, making 24 hour coverage possible. As it is now, I’ve had overnight LEMS issues, so I take one 180 MG time release Mestinon for overnight coverage. It helps.
    I’m anxious to hear when Catalyst begins their trials for this new version. Maybe I can give it a go!
    What’s your case for a time release Firdapse schedule?

    lori-dunham replied 2 years, 8 months ago 2 Members · 3 Replies
  • 3 Replies
  • lori-dunham

    April 2, 2021 at 7:45 pm

    I think that would be amazing! Grace has extreme weakness in the morning because her last dose of rizurgi is at 6pm the night before. A time release pill would be a game changer!!!

    • price-wooldridge

      April 3, 2021 at 7:15 am

      @lorildunham I agree! I just spoke with someone at Catalyst about when when some patients may be able to start trials with a formulation, but no word back yet. I don’t know Grace’s treatment plan, but I do take a 180 MG Mestinon to give me some coverage overnight.

  • lori-dunham

    April 3, 2021 at 8:27 am

    This is a great step in the right direction. Grace does not take the time release mestinon yet but I’d like to ask about it at her next neurology appt. I hope it could help her a bit throughout the night and first thing in the am.

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