Forum Replies Created

  • Marcie

    Member
    May 13, 2022 at 8:23 pm in reply to: Mestinon Side Effects

    I am extremely sensitive to Mestinon dosing. The tablets at 30mg five times a day caused esophagitis, gastritis and duodenitis among other side effects with rebound as it wore off. I took generic liquid Mestinon 2mg (equivalent one thirtieth of a tablet) with good effect several years ago but stopped because of cost.
    I now take 6mg generic liquid Mestinon (equivalent of one tenth of a tablet) every three hours as any more causes the side effects you are having. I was able to get the insurance to lower the tier so I did not have to pay $830 for eight ounce bottle but only $20 a month. The MGA patient assistance fund might help you pay for it. The studies recommend thymectomy even without thymoma (read New England Journal of Medicine article from several years ago you can google) not must medical therapy.
    So you see not every one need the same Mestinon doses. If I ever had a full tablet I think it might have done me in.

  • Marcie

    Member
    May 13, 2022 at 8:13 pm in reply to: Mestinon Side Effects

    At most I was only able to take 15mg every three hours five times a day but eating with it even a total of 1500 calories a day put on 20lb in months. I currently take generic liquid Mestinon 6mg (a half ml of 60mg/5ml) liquid.The last time I took it a couple years ago I could only take 2mg at a time, an equivalent of one thirtieth of a tablet as any more caused side effects. I stopped taking because of cost but this time I was able to get the insurance to lower the cost from $830 for eight ounces to $20 a month with the correct information. The Mestinon caused esophagitis, gastritis and duodenitis, severe flatulence, and the fact I am so sensitive that I cannot take more than a thirtieth to a tenth of a tablet euivalent that were documented so the insurance now pays. I am unable to take immune suppressants as I had tuberculosis exposure as a nurse treated for a year that contraindicates immune suppressants and the risk/benefit of IVIG or plasmapheresis related to my symptom severity rules that out also. While your provider and you need to look at other therapies including thymectomy even without thymoma as recommended in a New England Journal of Medicine article several years ago, you may find as I did that what is considered normal Mestinon dosing is too much for you too. If you cannot get your insurance to pay try the Patient Assistance Fund of the MGA.

  • Marcie

    Member
    March 2, 2022 at 9:03 pm in reply to: Did you learn anything new on Rare Disease Day?

    Stephanie, Please be aware many have false negative SFEMGs and negative antibodies. who actually have MG. Visit FB group for Seronegative MG to learn about this. I had negative nerve conduction tests/electromylogram tests and negative antibodies and was erroneously told I did not have MG. I got encouragement from that group and found a neurologist 5 hrs away who properly diagnosed me with MG based on reversible eyelid drooping(ptosis) which can be as little as 1mm and response to Mestinon (pyridostigmine) with symptom relief within 20 minutes of first dose . This was after 2 neurologists told me I did NOT have MG. Getting the correct diagnosis changed my life!!! Please consider getting a correct diagnosis as MG does not go away just because someone says you have negative tests and do not have it