It's great that you have good doctors.
The taper of Pred all depends upon what his symptoms are on the alternate days, up until he takes the higher dose. If he notices ANY of the symptoms I described, he/you should contact his doctor immediately. OR go to the hospital for guidance. An adrenal crisis is nothing to mess with.
Some people can do drops like that, others can't.
What bothers me the most about the taper is that they're keeping the 80 mg. steady. That means he'll be on a adrenal roller coaster ride! A taper should include dropping the every other day dose as well. I understand that his eye symptoms were better at the higher dose, and that might be why they are thinking of keeping it high. HOWEVER, that sets him up for disaster down the line when the difference between the two days is higher!
Yes, having MG can be scary, but as long as he is aware of how MG can progress, etc., he should be fine.
I cannot stress enough about hot weather (or being heated up by activity or infection, etc.) making MG worse. If he does get hot, he needs to cool down his entire body right away, with a cool shower or fan or cook packs.
MG rarely stays as ocular MG. Perhaps that's why they did the Pred so soon. Some doctors think that if they stop the immune process before it progresses to generalized, there's a better chance of it not doing so. The studies are mixed on that, though.
There are certain drugs that can make MG worse, too. He should NOT have quinolone antibiotics or Ketek/Telithromycin. Ketek can put a MGer into an MG crisis. Look at the
www.myasthenia.org site for more info.
Stress, lack of sleep, surgery, and anything else you can think of that would stress out the immune system (bad food) can make MG worse.
Sometimes MG patients also have other diseases (celiac, thyroid, pernicious anemia, etc.). FYI.
The members here are great! Their experiences, knowledge, and support are invaluable. Ask as many questions as you need answered!
Has anyone mentioned a thymectomy yet? Have they done a scan of his thymus?
Annie