Reply To: Time of decline
I wish more people would give their experiences here. Helps us maybe gauge what’s happening or what to expect. I was diagnosed in April 2019. Initial symptoms June 2018 was tingling in my feet while I went for a run 8 weeks post shoulder surgery (believed to be the trigger in my case). Feet got worse in the Fall and started feeling buzzing on fingertips. Winter, I was twisting my ankles seemingly all the time and didn’t know why. Had basic neurological tests but negative. Early March 2019 my upper leg power seemed to vanish overnight! Got every test possible as soon as possible. Positive EMG, Positive elevated protein in spinal fluid and presented accordingly. CIDP.
8 weeks ago started 80 mg Prednisone, did wonders. After 2 weeks dropped to 70, still good. At 4 weeks went to 60, some sensations can back, also started 500 mg x2 daily Cellcept. Met with the doc and bumped back up to 80 mg Prednisone. After a week I requested to go to 100 mg to “get over the hump” and working even better but I’m not whole yet and unclear what the long term future will be. Also jumped to 1000 mg x2 daily Cellcept.
Planning on staying at a high dose of Prednisone until the Cellcept kicks in about mid-July and then start to taper Prednisone and hope for the best. I’d love to hear from anyone who been down a similar road like this and how it worked out.