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  • Pyridostigmine (Mestinon), Changing My Dosing, You?

    Posted by price-wooldridge on October 14, 2021 at 7:00 am

    Pyridostigmine (brand name Mestinon) was the first medication prescribed after my neurologist delivered my diagnosis of Lambert-Eaton. Amazingly, I found it worked! I got better on the treadmill immediately.

    The first prescription was for one 60 MG tablet four times a day. Anecdotally, I heard taking them along with my amifampridine would be even better. I did that.

    After a time, I began having neuromuscular problems overnight, long after my last pyridostigmine and amifampridine were past. We added one 180 MG time-release pyridostigmine tablet at bedtime. That seemed to help.

    Soon I decided I liked the time-release so well, I decided to change my dosing, dropping the 60 MG tablets and adding one 180 MG time-release in the morning, theoretically giving me pyridostigmine coverage 24 hours. I thought that went pretty well…for awhile.

    In the last few months my LEMS symptoms have worsened. I’m experience more fatigue, more hip weakness, and more “LEMS walk”. This is not good. At my last neuro visit, we talked about dosing, and my neurologist stated she didn’t think the time-release version was as effective as 60 MG tablets. She didn’t cite any reference, but I heard what she said. I’ve got little to lose as my condition has worsened, so I’ve made another change. Now I’ve backtracked to the 60 MG tablets four times a day, taken with amifampridine, and one 180 MG time-release tablet at bedtime. It’s early, but I think I feel improvement. Time will tell.

    Though I’ve had no problems with taking pyridostigmine, I hear many who do. It’s often heard complaints of GI/stomach problems after taking the medication. Given its helpful effects at the neuromuscular junction, that’s unfortunate. If you take pyridostigmine (Mestinon) and had these problems, how did you mitigate them? Here’s a good article on pyridostigmine recently published on our web page. Interestingly, near the end, they mention an alternative I’ve never heard of, distigmine bromide. I think this would be worth a discussion with your neurologist.
    Here’s the article.

    https://lamberteatonnews.com/news-posts/2021/09/28/cholinesterase-inhibitors-alone-can-ease-lems-symptoms-case-report/

    price-wooldridge replied 2 years, 6 months ago 2 Members · 2 Replies
  • 2 Replies
  • roberta

    Member
    October 15, 2021 at 2:15 pm

    I take two 60 mg pyridostigmine 3 times a day ( after each meal).   I have been on this dose for over 10 years.   As long as I  take them after  eating, I have few problems.

    • price-wooldridge

      Member
      October 15, 2021 at 3:51 pm

      @bobbi-lynn-berry Ah, thanks for your report. It’s good to know you get along well with pyridostigmine and have for so many years. Taking it with food seems to be a key for many people. Me, I just take it anytime. I must be very lucky! Thanks for your report.

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