Thanks everybody 👍 I’m just in the thinking about it stage and will definitely talk with my neurologist before deciding anything. Unlike prednisone, Mestinon doesn’t technically require a taper down - it’s just I had a horrible experience with a year-long taper down with the prednisone that makes me super cautious about a hard stop with anything at this point…

You are right, Bob, it is probably time to find a new doc. A neurologist who specializes in neuromuscular disease is often the best choice. Also if you live near a major MAJOR hospital like Cleveland Clinic or Mayo Clinic (I'm sure there are others) that are involved in research as well as treatment, it would be good to see what they offer. Cleveland actually has a Myasthenia Gravis Clinic. It was very helpful to me and because they were 4 hours away the doctor there set the plan and then worked with my neurologist who is a neuromuscular specialist that also had a fellowship with a well-known MG specialist in D.C. Her fellowship was many years ago but she remained interested even though she has not had many MG patients in her career. I am the only MuSK+ she has had. That is why she ended up sending me to Cleveland; She knew the mestinon was not helping and there was no solids, Vyvgart, omaavy, or any of the treatments you hear about now. Anyway Cleveland told me to get off the mestinon and I just did. Dr. Levin said it would not help with MuSK+. He said it would not help and the only thing they had to offer MuSK patients was Rituxan, which as you know became the answer for me. They did not say it was necessary to taper. I do not think mestinon stays in your body long. My understanding was that it lasts only hours. That was in 2018 and maybe opinions have changed. I was up to mestinon 5-7 times a day as needed and I just threw the bottle away.
I'm not telling you to do that but I would certainly talk to your new neurologist. and ask if you can try a day off of it. Honestly with as much as I was taking I did not feel any reaction when I went off it. I understand the tapering and some neurologists would be leery of any quick med change but then again most never have more than a few MG patients in a long career.

Correct. They are in the same class of medication. They thought it might work but as of now they have pulled that. Is Vyvgart the problem or something else like infection or heat. It’s been bad this year. Either way get or talk to a good neurologist.

Hey Bob. It depends on how long you have been on Vyvgart. If Vyvgart works then one day it doesn’t. I was on it for I’m think 7 months, then the next thing I knew I was in crisis. They changed me to Imaavy and I just finished having another episode. Be careful.

i had experience took mestinon from 8 tab per day tap down to 2 tab per day for 2-3month, but when i do hard exercise more than usual i took extra..Unfortunately i got another crisis but now start all over again.But i know a person who just take mestinon 1-2 tab per day,because the symptoms are remission.Best consult to your Doctor.