I haven't had any relapses as I've tapered the prednisone. I've had an occasional off day, where I felt tired, depressed, or irritable, but there weren't many of those days and they never lasted more than a few hours.

I hope you continue making good progress with your taper. You will need to be slow and patient.

There is good information about GCA including info on prednisone and Actemra treatments and how they work differently on the Vasculitis Foundation website. They also have info on building your medical team including rheumatologist, neurologist and ophthalmologist.
I primarily see a rheumatologist for my GCA treatment. The prednisone is important but has many side effects. Per my rheumatologist Actemra helps me get off prednisone sooner and significantly reduce the amount of prednisone needed over the course of my treatment than Prednisone alone.

I was diagnosed with PMR and GCA in March 2024. Pain from the PMR was debilitating, and I had daily migraines and some blurry vision from GCA. My PCP started me on 60 mg of Prednisone and I have tapered off for the past year. I am finally off of it! The moon face is gone and I lost a few pounds. My rheumatologist started me on Actemra (weekly injection), which is a recommended treatment for GCA. I have tolerated it well, and as far as I know I have no side effects from the Actemra. I will do anything to avoid taking Prednisone again. I do have some neuropathy in my wrists and hands, but I can live with that! Unfortunately, the Prednisone did some damage and now the endocrinologist wants me to start Fosamax because in that one year time, my bone density decreased by 10% (I have had osteopenia for a few years). Good luck with your treatments!

Hello jeanrod825
My diagnosis of GCA was October 2024 too ! Albeit mine is large vessel GCA/ PMR

In my case I started pred 50mg with concurrent 162mg subcutaneous Actemera weekly. A rapid pred reduction to zero in February 2025.
Ie - 3& half months .

Side effects of pred were minimal once on a reduced dose & all short term side effects have now gone.

I’ve had one Aclusta IV infusion Nov 2024 as a bone density loss preventative, and will have another infusion Nov 2025 before bone density scan. I had minimal osteopenia to start , possibly not unusual for my age 67yrs.

Side effects of Actemera nil except for some mild neutropenia and small increase in cholesterol.
I've had zero infections not even a cold and I’ve been out and about as usual, I’ve been travelling internationally too .

I was in remission by the first month of treatment , and so far remained in remission calculated by normal pathology ( apart from reduced neutrophils & slight increase in cholesterol but still in normal limits ) and absolutely no PMR pain symptoms.

I’d say I’m fortunate Actemera has made me well again, put and kept me in remission & saved me from large cumulative doses of damaging prednisone.

Actemera has been a wonder drug for me .

Everyone’s case is different but I can’t understand why your doctor wouldn’t consider Actemera as a known effective modern treatment for GCA , to spare you the short and long term side effects of pred .

If you wanted you could ask again about Actemera , and / or get a second opinion.

Wishing you well.
Maye