Got really nauseated last night and totally weak last night.I couldn't even hardly put my house coat on. Couldn't press my lips together again. Couldn't talk... It just hit me, like bam! This happened last time I tapered Prednisone, some nights I would be okay other's that would happen. Also even with Rituxan I am relying on Mestinon due to the Taper I believe. Before I started the taper I was doing okay I thought. But I guess it's worth it, getting off Prednisone. I survived with MG without it for 2 years before my aspiration Pneumonia hit. Then they pumped me full of steriods...Ugh, been on it for a year now.
The nausea and bad weakness last for 1-5 hours...Then it tapers. So strange. Anyone else get that?

Lisa, It sounds to me as though you're a person who has to do a snail's crawl taper. You are having what sounds to be an adrenal crisis any time you taper too much. It might fool you into thinking that it's MG weakness. You get weakness from an adrenal crisis, too.

You should speak to your doctors again. You can't push this. You might have to resign yourself to the fact that it could take a year to get off of Pred. Even when the Rituxan kicks in, you would still have to have a slow taper because this isn't about MG, it's about the adrenal glands.

That "zero day" BS they try to do is insane! That literally gives you a drop from 50 to nothing. It could kill you. I wish doctors would stop even thinking that's an option. They nearly killed one of my friends doing that.

I'm really sorry you aren't feeling the effects of Rituxan yet. It shouldn't take 6 months to kick in! Again, the weakness may be from the Pred withdrawal and not MG.

Do you have droopy eyelids? Is there a way to physically check if it's MG or adrenals?

I really hope you can work your way to a remission. I hope you'll be okay!!!


Annie