Hi, Susanj. Welcome to the forum!

I'm sorry things are getting worse for you.

Have you sat down with your primary doctor? There might be other things that could be making your MG worse, like a thyroid disorder. Other things that are common are B12 and D deficiencies. Has your primary doctor looked at your kidney and liver functions lately? Overall chemistry, like electrolytes?

Did your doctor test you for the TPMT enzyme before putting you on Imuran?

http://emedicine.medscape.com/article/1829596-overview

Perhaps Imuran doesn't work well enough for you. Do you have a neurologist that you feel confident in?

It's such a hard balance between doing things and getting weaker. Even though I know my "pattern" of weakness, MG still surprises me.

Maybe take a look at any factors in your life right now that could be making things worse. Do you drink too much coffee (caffeine does what Mestinon does, to some degree)? Are you stressed out? Getting enough sleep?

I don't do well on a regular basis. I'm finding it very hard to cope with just the necessary activities every day like washing dishes and making meals. But what I do is to set myself up for success. I sit whenever possible. I stay coolish. I sleep whenever my body tells me to. I alternate activity with rest. I stay the heck away from any stress. You really have to streamline your life to deal with this stupid disease.

I hope you can figure out if there is something else going on making MG worse. Take it easy!


Annie