Hello @sweetpeanutbunny and welcome to Mayo Clinic Connect. I am so glad you found this group! I, too, have clippers—was diagnosed 4 years ago and undiagnosed for a year before that. Doctors had never heard of it or seen what the MRI showed. I was also given the height doses of steroids and then transferred to a rehabilitation center for a month. I’m better now but still on oral steroids. The doctors put me on Mycophenolate mofitil —a replacement for steroids. It has been a long road for me.
When you come off of the steroids (cortisol), you must come off slowly and be monitored carefully (usually by MRI) to see if the inflammatory lesions return. When mine started coming back, i could feel myself “sliding backwards” and knew i had to get help right away. This time i was given rituximab, a monoclonal antibody. It’s been given to many clippers patients it’s great success. Not for me. The drug quit working after 18 months, so i was put on cyclophosphamide which did the trick. Now I’m on Mycophenolate mofitil and prednisone only. I’ve tapered to 5mg of prednisone and so far so good. I have an MRI next week so we’ll see. I will look for some of the articles that i have on clippers so you can study them. You want to be well educated when you talk to the doctors!
Please take care of yourself and just take it slow.
Did you have a brain biopsy to confirm clippers?