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Sorry to hear that you are still having MG problems. I am in remission for 15 months, have only had the original 5 days of 5 hours of IVIG … when I was finally diagnosed after 8 months of being very, very sick. No doctor could diagnose me .. a floor nurse … recognized my symptoms and talked them into testing my ANTIBODIES… all three tests were over the roof.
I am currently on MESTINON 60 MGs three times a day and CELLCEPT at 1000 MGs twice a day. My best advise is to join 2 or 3 of the MYASTHENIA GRAVIS support groups and ZOOM with them in CALIFORNIA or any other states. I Zoom with four different groups. THEY are a GODSENT. They can tell you what is working and not working for them … in pills, solarius, Vyvgart, or IVIG. Your fellow MG attendees know ….. who locally are the GOOD as well as the UGLY and clueless (insufficiently MG educated) doctors are in your location. They and the SUPPORT GROUP MONITOR are a terrific asset to use.
Depending on you are, the UNIVERSITY of CALIF at IRVINE is doing MG trials. They contacted me by email, as well as called me by phone. They will help you with MG intelligent doctor choices. I answered all her questions .. but did not have a high enough number score on those MG illness checksheets, to still be sick enough to qualify .. as I was in remission.
I have been stable for 15 months. Use a support group and find a GOOD MG doctor. Do not ASSUME that MESTINON is what is hurting you. My Mestinon and Cellcept are keeping me fine … and MESTINON is not TOXIC to me ….. PREDNISONE IS VERY TOXIC with lots of side effects and maybe your medication issue. Use the support groups to find a GREAT MG DOCTOR nearby.
PREDNISONE causes a great weight gain, moon face, insomnia, and gave me (with the statin drugs) MEDICALLY INDUCED DIABETES II. So my blood sugar numbers (never had diabetes ever) jumped up to 350, 400 and “HIGH”. Most medications are probably dosed by a patient’s weight, so that could affect you too .. if you are getting too much for your slim frame. In the first 6 months that I was undiagnosed .. I lost 43 pounds … and continued to lose even more weight … but I am back to my original weight .. due to massive doses of weight-gaining prednisone, until it was STOPPED.
Find a good doctor to slowly taper you off nasty PREDNISONE. My new MG savy doctor got me tapered off by December 2020 and on 10-25-2021, my other new DIABETES doctor got me tapered off of SHOOTING UP myself once or twice a day with LANTUS and INSULIN SHOTS in my abs, after 5 months in five hospitals, getting shot up at least once or twice every day in the hospitals and then by me (when I finally got out).
So use the support groups (google the MG Foundation website believe it is http://www.myasthenia.org … or its counterpart http://www.myaware.org for their locations) Both websites have plenty of downloadable fact sheets of dangerous drugs, info pages, and doctor/emergency room handout papers, to give to emergency crews and emergency or 911 help. I all but DIED … ACUTE RESPIRATORY FAILURE due to ANESTHESIA OVERDOSE. THE PACU nurse called a CODE RED on me and got me breathing again … after I was put down with two sedatives … for moving too much for MRI and CAT SCAN tests Be informed and stay safe … with help from support groups … they will help you and your doctors get a safe combination of meds. LIVE LONG AND PROSPER !!