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Newly diagnosed, have been so so ill with generalized m g. Still really bad but can lift my head and hands and swallow properly since I started on mg prednisolol and 60 mg x 4 mestinon. But I will need a higher dose. Very tired, can´t go outside and walk with a rollator inside. I live alone and it gives me anxiety and fear. Are there any more medication that helps you?
I´m 73, have had a stroke and a mild heart attack so I doubt I have many years left. But certainly hopeful, and it´s a comfort to have contact with other sufferers. In my neck of the woods patients like us are extremely rare and I don´t think even expert neuros know as much as American. Maybe they´ll learn a bit from how my variant works? 🙂
I´m 73, have had a stroke and a mild heart attack so I doubt I have many years left. But certainly hopeful, and it´s a comfort to have contact with other sufferers. In my neck of the woods patients like us are extremely rare and I don´t think even expert neuros know as much as American. Maybe they´ll learn a bit from how my variant works? 🙂
Not trying to discourage you, but I was diagnosed with gMG in June 2024 and we are still tweaking medication. Currently taking Prednisone, Mestinon, Cellcept daily Vyvgart infusions, 4 weeks on and 6 weeks off. So hang in there, it can actually take a few years for the gMG to stabilize. It's hard, but be patient, and know there are others out there, like me, who know how you are feeling. Tomorrow is another day.
Hi Aancy,
For MG I take Ultomiris every 8 weeks and mestinon 60mg 4x/day.
I typically feel more symptomatic starting around the 6th week. My eyes used to be shaded more by my eyelids. Even now, blind in one eye, the other eye has more shading.
I take a 12mg/13mg seesaw dosage of Prednisone, as I am tapering on Prednisone. On. M,W,F I have prednisone. Tu,Th Sat,Sun I take 13mg.
I have suffered most near all side effects you read about prednisone so if you can avoid it or have low dose, stay low. I have always been told low dose like I am in does not help MG.
I have had emergencies of severe weakness, including low blood pressure, weakness in leg muscles to the point I can’t move them and I collapse. I can move after rest but can still be too weak that with MG exacerbation I needed to be in hospital and on iv Prednisone..
Rescue that has worked include Plasmapheresis, and high dose Prednisone. I am allergic to the other key rescue medicine (IVIG). (That was when, I experienced anaphylactic response and went to the intensive care unit. I needed a Plamapheresis as my rescue medicine, followed by high dose Prednisone.
I hope helpful.
What medications are commonly used for myasthenia gravis, and can flare-ups still happen when medicated?
It's really encouraging that you're seeing some improvement with prednisone and Mestinon, even though things are still challenging. Many people with MG use a combination of medications to manage symptoms.
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