@liz26 I was diagnosed with GCA and PMR in late June 2024. I was diagnosed in the emergency room due to vision problems in one eye. Luckily my vision was ok once I started treatment. I started at 60 mg per day of prednisone, and began taking weekly Actemra injections a few weeks later. I finished prednisone last August, and I'm still taking Actemra injections every other week. Assuming I don't have any flares, I will finish the Actemra next summer. That will be 3 years of treatment.

I was like you. and felt very lost when I was first diagnosed. I eventually got used to all of the changes caused by the diseases. Once I started treatment I never had any more GCA or PMR symptoms, but I did have quite a few side effects from the prednisone. Insomnia was bad until I got down to 40 mg per day. Also my metabolism was really messed up by the prednisone. It was very hard for me to know what and how much to eat. I was careful with portion control, and I continued exercising (walking or a mix of walking and jogging for 4 miles day, plus weight lifting and stretching every other day). I only gained 4 pounds, but I still developed a moon face. That started fading once I got down to 7 mg per day.

It sounds like you're doing the right things. I still take all of the supplements you listed. I saw my ophthalmologist every 3 months while I was taking prednisone. The prednisone increased the pressure in one eye, but it wasn't enough to treat. The prednisone also increased my cholesterol quite a bit, but it went back down as I tapered.

I was very tired the first few months of my treatment, so I rested a lot of the time.

On a positive note, I've felt very good since about 6 months after I finished the prednisone. I'm running better now than I have in several years.

Good luck with your recovery. You just need to be patient.