@alandy233 I'm sorry you are having such difficult problems with your vision. I was fortunate that my vision was saved by infusions similar to what you received and 6 weeks of 60 mg prednisone per day followed by a slow taper over the next year. I also began taking weekly injections of Actemra 6 weeks after I was diagnosed with GCA and PMR. That helped me to eventually get off of prednisone.

I am surprised that none of you doctors have suggested Actemra. Is there some medical reason they aren't prescribing it for you? When I google "does Actemra help preserve vision in gca?", it says the following:

"Yes, Actemra (tocilizumab) helps preserve vision in Giant Cell Arteritis (GCA) by acting as an effective "rescue" therapy for patients whose vision worsens despite high-dose steroids, potentially preventing further loss or even improving existing vision, especially when started early in resistant cases, though its main role is reducing steroid dependence and flares, according to Ophthalmolgy Advisor and National Institutes of Health (NIH).

How it helps:
Rescue Therapy: It's used when standard steroid treatment isn't enough to stop vision loss, with studies showing it can rescue vision in some patients with glucocorticoid-resistant GCA, note Ophthalmology Advisor and National Institutes of Health (NIH).

Prevents New Loss: In patients without visual symptoms at the start of Actemra, new ocular problems often don't develop, according to a study in Sage Journals.

Improves Existing Loss: Some patients with vision loss (PVL) before starting Actemra have shown improvement, particularly if treatment begins sooner, state National Institutes of Health (NIH) and Sage Journals.

Reduces Steroid Taper Relapses: Actemra helps patients stay in remission longer while tapering off corticosteroids, reducing relapse risk, according to Review of Ophthalmology and The New England Journal of Medicine.

Key Takeaway: Actemra is a crucial tool in managing GCA, offering hope for preserving vision when steroids fall short, but its effectiveness is highest when used strategically, often in combination with steroids, and continued long-term to prevent flares, notes YouTube and The New England Journal of Medicine. "

Actemra can take up to 3 months to take full effect, so the other medications might be needed to control your GCA until the Actemra can take effect.

I am not sure about this group, but I know that there are several members of the PMRGCAuk support group that have lost at least some of their vision from GCA. You could check with them about your issues. You can go to healthunlocked.com and join the PMRGCAuk community so that you can post to that group.

In regard to what your ophthalmologist is trying to accomplish with your medications, I think he or she is trying to get your GCA under control. Apparently last year your taper was too fast, or else you could be resistant to steroids, so your doctor is starting you back at a high dose of prednisone plus the methotrexate. The folic acid is needed to offset the side effects of the methotrexate.

Please let me know if I can help you in any other way.