Abby, Are you considering going on Pred or are you already on it?

I have some pretty severe symptoms right away when going on Pred, which I've only been on for 1. An allergic reaction and 2. My MG Crisis.

I get "steroid psychosis," bradycardia in the 40's, bad edema and the associated weight gain and infections. And it did make me feel extremely hungry. I also craved sodium, which probably meant it had an adverse effect on the adrenals. When I got an infection from the steroids, I went on antibiotics and got Clostridium-Difficile. So my weeks of steroid use from the 2nd time I had it was helpful because it made me slowly less weak and made me look like I had a facelift but came with way too many side effects.

I think weight loss should be the least of your concerns, IMO. You're still on Imuran, right? If you want to roll the cancer dice, what about Rituximab? I think you need a very good MG expert when thinking about these kinds of super immunosuppression.

Are you thinking of Pred in addition to the Imuran? You didn't really preface your question so I'm not sure why you're asking about the weight gain. Have you considered IVIG; I can't remember if you've tried it.

Deciding on Pred is not the same as deciding on the other immunosuppressants. It comes with so many potential side effects and can cause other conditions, as I'm sure you know.

Weight and fluid gain can raise your BP and cause more problems, like with your heart and brain.

MG is like walking a tightrope between what you want to do and what you can do. I get that you want to feel better but at what cost? Only you can answer that.

Annie