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...
I know the winter weather can be difficult for all of us. I hope all of you are feeling okay.
I have been on Mestinon for a year now and have already changed doctors. I can only take about 30 mg of Mestinon at a time or I have bowel problems. I am also taking Mestinon extended release during the night. Last year I was on Prednisone for about 6 months. It helped with the swelling in my eyes and double vision. My new neuro immediately wanted me to have IVIG four different times a year to help me feel better. The insurance denied the IVIG the first time. She will be calling them and resubmitting. She wants me to be on IVIG and Cellcept.
I have a few questions:
1. Does anyone here have IVIG only 4 times a year? From what I have read the IVIG is every month.
2. Do you need someone with you during the IVIG? I am having a difficult time finding someone able/willing to go into the city for these treatments.
3. A friend of mine is a nurse and she said Cellcept is dangerous. Most of the patients she has seen has acquired cancer within five years of being on Cellcept or other immunosuppresents. How long have you been on Cellcept? Is it long term, or until my symtoms subside?