Forum Replies Created

  • Pamela D England-Moore

    Member
    May 20, 2022 at 8:04 pm in reply to: Mestinon Side Effects

    First, I would like to say that ANY doctor prescribing a medication for which he/she doesn’t even “know why” you get your specific side-effectives of mestinon shouldn’t be prescribing it.

    When I was first diagnosed with MG some 30+ years ago, I was told that the nerve “message” couldn’t stimulate my muscles because the antibody prevented the message from connecting to the muscle. By taking mestinon, more active, non-antibody interrupted places became available on my muscles that there was a better chance of the message getting through cleanly. However, the side effect was that at times, too many spots were activated which manifested in the “jerky” movements. For me, it caused my intestinal muscles to “jerk” and I had constant constipation. After about three months on mestinon, I had an MG crises and was put in the hospital for what is now called “PLEX”. My blood was removed from my body and the plasma was separated out. I was then given new plasma which was free of MG antibodies.
    Soon after that, I was taken off of the mestinon and put on prednisone which eventually caused severe complications on its own. I later found out that mestinon was never intended for long-term use for MG.

    I was eventually prescribed Azathioprine (Imuran). It took many years to get me to a theraputic level, but have been “crisis-free” for many years.

    Again, no doctor should be prescribing medications that they have no idea what the side effects may be.