Reply To: Say Hi To the New Guy

July 9, 2019 at 9:32 am

WOW! Your doc is under medicating you! How much do you weigh? I’m on the same timeline as you with the same symptoms this past winter. Started 80 mg in April and turned around quickly. After 4 weeks I was down to 60 mg and symptoms crept back and I told my doc I wanted to go back to 80 and he agreed. Started an immunosuppressant drug at that time also. After 2 more weeks at 80 mg, I suggested to got o 100 mg because I felt I needed a little more to overcome my immune system from acting myself while it takes 2-3 months for the immunosuppressant drug to kick in. 2000 mg of cellcept, btw. So I was on 100 mg prednisone the whole month of June and feeling near 100 percent. Now I will be tapering 10 mg every 2 weeks to get down to 20 mg sometime in October and hopefully, the immunosuppressant drug does what it should do. What city are you in? I’m in Chicago and there are some good docs here with experience with this disorder. You have to speak loud to your doc about what you want. They should respond, and if not you need to move on quickly. You can’t let your immune system to continue to eat away at your myelin. You need to put it in check and get the healing process started. The longer you wait, the more damage occurs and the harder the repair becomes.