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...
hi everyone. Have ocular MG, had significantly troubling symptoms in February 2018 (double vision, paralyzed eye), was on 40 mg prednisone for 2 months, gradually tapered down over the next 4 months to 15 mg every other day but unfortunately the double vision came back. Not nearly as bad as it was in February but still very bothersome and tough to focus later in the day. Doctor told me to get back on 10mg of prednisone everyday, and if symptoms don’t resolve in a few days 10 one day and 15 the next. She said I can’t go higher than that because I’ve been on prednisone for too long. Wants to start me on cellcept (1000mg a day) for a few months and then down to 500mg a day until I’m ready to be completely off.
How long does prednisone at relatively low doses take to kick in for minor double vision, any idea?
Ive heard scary things about ccellcept side effects. Any experiences? I’ve even heard cancer....
you will ahve to get with your neuro and have an extended conversation how to proceed in the administration of your meds,
do not let the doctors give you any drugs with out a clear eplanation and, what side effects are there.
cellcept and others drugs are not for mg and can set you in a course of danger.
when ever you get a precrition you should go to rhe following site.
DRUGS.COM, they are the best reiable site in which you can get a total overview, and side effects
unfortunatly, most of drugs given are used for organ transplant, and are not for mg, hwen you read the side effects and overview, it give you a clear picture of the danger, but you have to take the time and read them completly.
this is the best informayion and advise i can suggest
you are not along in this,
Best of luck (fighter)
From my experience, reading, and understanding, prednisone does not work rapidly at low doses to improve MG. When I was at 15 mg every day and DV came back, I bumped it back to 40mg and took that a few weeks to get rid of the DV and then again began tapering down. I really didn't like DV and although I patched and then learned to close one eye, I figured I should take enough prednisone (or alternate medication) to get rid of it, and so I did. Tapering prednisone was pretty easy for me from the high doses down to about 20mg and then I went slower. So it didn't bother me physically to occasionally jump from 15 to 40 for a few days and then directly back to the low dose to drive away the DV.
My doctor said that I probably could tolerate prednisone at 15mg per day for the rest of my life if needed, although she mostly worried about it pushing me into diabetes. I took treatment for osteoporosis as that was a problem with prednisone, and I did get cataracts. I was planning to switch to another drug (azathioprine was my choice) when I went into remission and didn't have to make the decision.
My mother had to take it at about 10 mg per day from age 65 to 91 for polymyalgia rheumatica (another autoimmune disease). It did give her cataracts, osteoporosis and eventually type 2 diabetes. However, she still did very well until the day her heart stopped and said that without the prednisone life would not have been worth living due to the pain. She took enough to curb much of the pain, and tolerated the low dose for 26 years with occasional increases to 15mg per day.
Good Luck
Russ