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...
Hello
I was hoping to see what works for most of you. Currently, I am on IGG every 2 weeks and supplemental oxygen with my Bipap at night.. I am 71, have been diagnosed for less than 2 years. Already have gone through Cellcept, Mestonon, Imuran, Prednisone.
Imuran, I thought no bad side effects until blood work had my wbc @1.4.
Cellcept and Mestonon caused extreme diarrhea. Prednisone had me climbing the walls and 15 pound weight gain in 3 months. I was weaned off slowly (at my insistence) and have been off for 2 weeks.
At this time I only have extreme fatigue and week muscle strength. I had droopy eye and swallowing difficulty at first (that is when I was diagnosed).
I had plastic surgery to lift the eyelids and that has helped. I had swallowing PT (who knew that existed?) Slower eating and turning my head to the side when I swallow helped on that. I have a very busy life, too much to say here. I still get much done in first half of day. By 3 or 4 I can barely move.
My question is if I had stuck with mestonon longer do you think the stomach issues would go away? Has one of you found a miracle drug?
Dee
I was hoping to see what works for most of you. Currently, I am on IGG every 2 weeks and supplemental oxygen with my Bipap at night.. I am 71, have been diagnosed for less than 2 years. Already have gone through Cellcept, Mestonon, Imuran, Prednisone.
Imuran, I thought no bad side effects until blood work had my wbc @1.4.
Cellcept and Mestonon caused extreme diarrhea. Prednisone had me climbing the walls and 15 pound weight gain in 3 months. I was weaned off slowly (at my insistence) and have been off for 2 weeks.
At this time I only have extreme fatigue and week muscle strength. I had droopy eye and swallowing difficulty at first (that is when I was diagnosed).
I had plastic surgery to lift the eyelids and that has helped. I had swallowing PT (who knew that existed?) Slower eating and turning my head to the side when I swallow helped on that. I have a very busy life, too much to say here. I still get much done in first half of day. By 3 or 4 I can barely move.
My question is if I had stuck with mestonon longer do you think the stomach issues would go away? Has one of you found a miracle drug?
Dee
http://www.myasthenia.org.au/html/lifestyle.htm
Good luck
-R
My answer for tummy troubles is to chew the mestinon tablets -- they are bitter, but after a while I got to love the taste (as it gave me such physical relief). Wash it down with plenty of water and make sure there is some food down there to cushion the fall...
Try nibbling on just half a 60 mg mestinon if that is too much. If you don't get any symptom relief from the mestinon, you could be one of those MGers for whom Mestinon does not work.
~Joe