Myasthenia Gravis Support Group
Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...
In between infusion,
My Neurologist made a big mistake this year. In October of 2016, my doctor felt the retuxmab would be the best fit for me. Years before, I was receiving IVIG, but of course a blood clot was my bonus. So the retuxmab works.
Now a whole year has gone by and no infusion. When she finally can to a conclusion that she needed to make her move. All of the infusion centers were booked up tight.
My infusion is scheduled for January 17 2018 and I’m slipping fast. A few days ago I went to the ER for a booster shot (125 mg steroid) injection. I felt better for a few days and I know the shot will not last. I’m tired, weak, slurping speech, some kind of flashing hits me then weakness comes and etc. She boosted me from 15 mg of steroid to 40 mg per day (it’s not going to work.
Ok family, WHAT TO DO BEFORE I SLIP IN MG CRISIS?
If you aren't using mestinon, that kept me functioning until prednisone worked and may be helpful.
I think the main thing is trying to take it easy and try to remain calm as worry and stress causes more problems.
One of our former members took methylprednisolone with weekly shots instead of daily pills, so another one of the shots might be in order.
Hope things work out smoothly and you don't get in this situation again!
Happy Holidays
Russ