Hi Alan,
You said you are on 5 ml (5mg?) of Pred every other day, that is quite low, what was the maximum you took per day?
I was almost fine and still tapering at 5 mg each day (I went up to 75, 2 years ago) then I tried 4 and that was it! Muscle weakness again...plus a pneumonia vaccine which put me completely down. I gradually went up to 30 mg each day, doubled the Mestinon and I got yesterday my 3rd PEX, next one two-morrow then my neuro on the 10th, to decide what to do next.
She wanted me to go to 50 mg/d but I refused (side effects on my sight) and I'm still waiting for the PEX to kick in, I don't have many options left…Cellcept seems to be useless.
Do not wait too long to get your neuro's opinion on an increase of med!
Maurice.