At first mestinon now start of prednisone
Nothing seems to work long term mestinon worked short term nothing seems to help I’m
Starting 10mg prednisone but it’s supposed to worsen before helping and that’s what’s happening
My 2 tops meds atm are mistinon (in infusion format once a week mixed with saline) 1 hour infusion and prednisone. The prednisone for me didn't touch my double vision until it was over 25mg and then went all the way up to 70 (prior to adding infusions). I just kept getting worst and worst, until i couldn't speak, chew or swallow without constant choking. Then they added the infusion therapy, IVIG at first, which brought me back to somewhat normal, then 2 months ago i switched to mestinon infusions which seem to work a bit better than IVIG, but both keep my bad side effects at bay. Currently my prednisone is at 50, not sure how much mestinon i'm on they mix it into the infusion bag based on weight, but those are my 2 top meds. Once you find the right mix for you, hopefully you will also be back to what i refer to as somewhat normal. I just can't do strenuous stuff I used to do regularly, but otherwise i feel normal. Only BIG negative is the weight gain from prednisone, about 30 lbs for me, and tough to work it off when heavy exercise is exhausting.
The mestinon did me no good, The doctor put me on 60 mg Prednisone, and it drove me crazy. Crazy dreams, some nightmares, panic attacks could not get my mind straight. And after a couple months started having severe dry eye, and hypersensitivity. The doctor changed my meds to vivgart and selsept. Still having dry eye, but the hypersensitivity is going away and the crazy dreams and other weird side effects went away with the Prednisone. I am allergic to the vivgart so they give me 50 mg of steroids with each shot. The eye doctor gave me steroid eye drops because the whites of my eyes being swelled, but it made my eyes worse. Seems I am just allergic to all types of steroids. The other meds are not good with me either, but not quite so bad.
So sorry Andy. You have a case of MG that is hard to treat. But don't give up. The Cellcept will take a long time to work, Maybe even a year. But once it does, there is hope you can get off of steroids. I am on azathioprine, which is a similar immunosuppressant. It did nothing for eight months, then suddenly stabilized everything. I now take nothing else. And after three years I continue to get incrementally better.
