WOW!!! Thank you so much, Kay. Your words were music to my ears. I feel the same way about the steroids and I think I am engaging them in a healthy relationship. 😁. I am going to meet with my Doctor soon and sort of speak with her about just what you are and have experienced. I am in the process of taking mycophenolate with the steroids and slowly titrating down on the steroids. I haven't had any negative side effects of the steroids. I am currently on 20 mg a day and titrating down as in next month I will go down to 10mg and then eventually 0---BUT--I think will ask my doctor if I can stay on the lowest dose of prednisone possible that will still keep the symptoms at bay and maybe try to get off of the mycophenolate. I too wish you all the continued healing on your profound journey.

Good luck on your journey my good man.

Thank you so much for your response. I always get a little worried that releasing the prednisone will mean the symptoms will reappear. Hoping the Cellcept will keep them at bay as the prednisone has. Happy that you have experienced the same positive results of this treatment journey.

My neurologist at the time introduced prednisone along side the other meds I was taking. When it got to 40 mg I could no longer tolerate that amount with the side effects, couldn't sleep, no more caffeine, depression, and weight gain. They tapered me off at my assistance and I felt better & mg did not get extremely worse. Today with a new medical team & new treatment the doctor will give me small doses to assist the others when I start to flare. Each person and their treatment. Is different. ( Was in the hospital a few times with flares and they need to get me out of the , I understood the need for that medication)

My neurologist started me on 60mg prednisone, I noticed a change for about a week then symptoms started coming back and other medications were added as well. The side effects for me weren’t that bad I did get the moon face that happens with prednisone and some weight gain but that was about it. It has taken my neurologist almost 3 years to find something to get me close to stable. I did experience my first MG crisis within the first year and a half of being diagnosed and mine was a pretty bad one that had other non MG related complications come in to play as well so left me in the hospital for 4 months. Hope your neurologist can get you headed in the right direction soon.