@mariannej We have a very similar story, except I lost the vision in my right eye at the beginning of my GCA journey in 2019. You're the only one I've heard of who had the 3 day I.V. 1000 Prednisone like I did. I suffered a stroke on Day 2, and a second stroke three months later. Was in a wheelchair for a long time, had your same ambulatory difficulties, and was just SO sick. Was prescribed the newer injection drug Actemra in November 2020, along with tapering Prednisone, but quickly taken off both when my WBC and neutrophils dropped drastically. Terrible six-week withdrawal followed. Now only on weekly Actemra injections and gradually improving. Began walking outdoors a month ago, with my trusty walker, and today broke my record at 1.2 miles! So very happy about that.
I hope you are having some easier days.
Warm regards,
Laurie