So I saw my Nuero today and after they found out how little the Mestinon is really helping, decided to get me on Predisone. This has been a very difficult 2 months. I had no idea I could feel almost normal with meds. I have been living basically crippled, barely able to sit on the couch and lucky to shower without having breathing issues. The last time I saw them was only the second time, and compared to the first time, (when I was diagnosed) I was feeling 100x's better, and told them I felt 80% to normal. Well the first time I saw them, I was probably hours from crises, so I did feel 100x's better. Today my husband told them I was only about 20% of my normal self (which he had observed and never told me, I'm lucky he watches out for me ).
I am very very excited to learn that I don't have to live this way for the rest of my life. I can't believe I may be able to take walks after dinner with my husband again!!!! Thankfully I will be starting my doses at 5 mg, and increasing another 5mg a week until I feel better, but I would like to take a few weeks at the 10-15mg range. Anybody have advise about what dose works for them, and how to combat the side effects? Thank you