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
Also learn to place your self this is a very very long race like a huge marathon not a 40yard dash!!!!
Chuck
Keep us posted, as you go forward -
- sorting through the different MG therapies.
From one Snowflake - to another Snowflake:
What a lousy disease, huh? MG forces us to be individual test subjects - trying to find a good combination of therapeutic treatments. No standard treatments, here.
Hang in there! There is more and more research, all the time - Ross
I agree with the others completely on finding whats best for you particually knowing how much you can accomplish and recognizing when your Mg is being exasperated whether its physical exertion and or mental stresses .
Again , Welcome to this fine group , Cj
I too was diagnosed later in life. I also got therapy for speech and swallowing. I do best with long acting Timespan in the back ground and adding in the shorter acting pyridostigmine. I take the time span 7am and 7pm then add in the shorter acting at 7-2-6 and more often if needed. I have to increase it is I am on antibiotics or pain pills and at other times if I feel weaker.
I am like chuck in that I take an anti refulux and use the imodium if needed. I take protonix, Neuro always said to take mestinon with fluids.
Also I think all of us are different. I had some eye symptoms mainly double vision when tired from the beginning but only now am having more significant eye drooping when things are not going well. As Ross says we are all snow flakes so are all a bit different in how we present.
Hope things settle down for you and get easier...Marie
My Neuro is great but I don't think he has a lot of patients with MG. He sent me to UW to see specialist there to see if there might be something he missed since I had so many problems with almost every drug he ordered.
Doing well, when the sun comes out in Seattle I feel better. Not sure it may be mental. Don't care feeling better it always a plus.
Tacrolimus is my immunosuppressant along with maintenance plasmapheresis and rituxan. I tried the others and for various reasons could not tolerate them.
Good luck and hope you find what works for you.
Hugs
Sherry