its almost 2 years since i first had MG which for the first 6 months was only double vision then came the weakness and all the other problems till the start of the preds and a few months of imuran but to many side effects on that so now im on 5ml every other day of preds the weakness is back thou my double vision is mild so im guessing that the antibodies are more under control
but will come back at a later date !!!!!!!!!!!!
so does the weight also improve as the steroids made my weight go up a lot
thats my hope now is to get my weight down again

Alan, a mark of strength, 2 years of pushing on with whatever this darn diesease sends your way, bravo!
As for the weight, it is so unfair isn't it. We need these meds and one of the side effects is weight gain. I am on a taper right now, so I am not sure when I can start to get some of the weight off. I have been on steroids for almost a year so I am sure they stay in the system for a while.
I hope that you are feeling stong and good luck with the weight loss.
Take care ~ Melanie

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.

Hi, Congratulations on fighting this disease! Life is not easy living with it.
The weight should come down, but I have heard of some people not being able to lose all of it.
How much were you on, and has it always been every other day? I've been on daily for 5 1/2 years. It can be frustrating, but am so happy to see that you're standing, or, sitting strong!
Love Lizzie