Thank you so much for responding! Wow! You're @ 60mg. every other day? My doc hopes to wean me to 40 mg. every other day - I also don't understand why we just can't take 20-30 mg. every day versus the BIG dose every other day.......... These steroids have made me blow up like a balloon in my face and stomach, plus I now have acne and facial hair - sexy - but am also truly thankful for them cuz' they did save my life......I know it sounds silly, but it hurts my feelings when I go out in public and people who have known me for years no longer recognize me - I didn't think it was that bad. The night sweats and panic attacks are the worst for me. I wake up just drenched - do you have any of these side effects? Oh, and the MOOD SWINGS! Good lord! Those are awful!
I started on 50 mg yesterday per my doc and know that it's a step in the right direction, but get so scared thinking I
am going to feel like I used to - - you know the feeling - - afraid to go to sleep cause you don't know if you're going to wake up, being unable to walk, talk, swallow, or even breathe. MG really did a number on me. Have you had a thymectomy? Are you on Mestinon as well? When were you diagnosed with MG? I'm sorry about all the questions, but this is such a rare disease and I'm still so confused about the whole thing, though very, very grateful that my docs were able to contain it and keep me relatively healthy. It's just hard sometimes, because this darn disease always keeps me guessing - I never know how I'm going to feel the next day and for a control freak, perfectionist like me that's hard. I do have great doctors who are vigilant about my health and for that I'm grateful. Take care and let me know how you are doing! Erin