Lambert-Eaton News Forums Forums Living With LEMS Staying On Schedule With LEMS Meds, Pass or Fail?

  • Staying On Schedule With LEMS Meds, Pass or Fail?

    Posted by Price Wooldridge on October 13, 2022 at 7:00 am

    If you were being graded, how would you fare when following your daily medication schedule? Would you PASS with flying colors, the apple of your doctor’s eye? Or would you be like me, sent to detention in study hall in hopes of getting remedial help?

    There are a number of strategies I’ve tried to follow. Sometime’s I’m good, other times not so much. I have a 3 Day Pill holder for my Mestinon and Firdapse. Each day, as I go it, I transfer one dose to a little porcelain pill bowl a friend gave me. There they are, in that little bowl, looking at me, eager to go in my month! But will they get there? Uhhh, usually, most of the time, sometimes late. Occasionally a miss.

    One strategy is to set alarms on my Apple Watch. This usually works, but occasionally there’s a fail. I tried a pill app on my phone but got tired of it annoying me all the time. I’ve not tried one of those expensive pill dispensers.

    How do you do, taking your LEMS meds? What are your strategies? Have they worked well for you? I need help.

    Price Wooldridge replied 1 year, 8 months ago 3 Members · 3 Replies
  • 3 Replies
  • David1949

    October 17, 2022 at 3:38 pm

    I put my meds together once a week for the entire week. I take my meds with breakfast, before dinner and before bed. This has been my routine for years.

    • Price Wooldridge

      October 20, 2022 at 8:43 am

      Yes, I use a 7 day pill holder too, and do as you do. The other holder I use for Firdapse and my other LEMS meds I can only do 3 days. And like you, I dose similar most days, 8, Noon, 4, and 8 in the evening. About 4 hours apart. Lately I’ve been using Apple Watch alarms to help me stay on schedule! That ‘usually’ works.

  • Ashley

    October 19, 2022 at 7:49 am



    I was putting mine together bi-weekly but I just started putting them together for a month and it’s been really helpful (for me) to do them that way. I also am able to keep ahead of when I need a refill and have plenty of time to ensure it gets taken care of.

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