Tapering off prednisone with GCA temporal arteritis

I'm sorry you lost part of your vision. I had several instances of temporary vision loss in one eye from GCA, but fortunately I received treatment in time to save my vision. I received 3 infusions of 1000 mg of methyl-prednisilone over 3 days while I was in the hospital, and then I was on 60 mg of prednisone for 6 weeks. I also started taking weekly injections of Actemra about a month after I was diagnosed with GCA. I am currently at 4 mg per day of prednisone.

I started feeling pretty good at 10 mg of prednisone. I had been having some muscle issues while exercising while tapering down from 20 mg to 10, and those problems went away. I noticed a significant improvement at 7 mg, and then another significant improvement at 5. At 5 mg I lost the few pounds of extra weight I had gained, and my moon face shrank quite a bit. I'm at 4 mg now, and it almost feels like I'm not taking prednisone. I'm feeling much better now than I have in more than 2 years.

Thank you so much for your input. You are giving me hope that I will feel better as prednisone goes down. I have mentioned Actemra to my doctor but she does not feel like I need it. Told me if I start with symptoms to go back to 20 mg of prednisone. Do you feel like you have had any relapse since cutting back on prednisone? I am seeing a Neuro Ophthalmologist and she does not feel I need to see a rheumatologist.

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.

Welcome @beebee123, New members are not allowed to share links for a short period of time to keep out spammers. I see that the link you mentioned is a legitimate resource and thought I would share it for you.

-- Vasculitis Foundation: https://vasculitisfoundation.org/education/vasculitis-types/giant-cell-arteritis/

How long have you been diagnosed with GCA?

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!

Thank you.
About 4 months.

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