GCA (Giant Cell Arteritis) and PMR (polymyalgia rheumatica)

Thank you very much. ☺️For me every time I tried to taper below 4mg of prednisone a day I started to get the temporal headache. So I’m hoping I can begin to taper again in a few weeks. My Rheumatologist would like me to taper 1 mg every 2 months. I’ll keep you posted. 👍🏻

Hopefully the Actemra will allow you to taper below 4 mg.

We're at the level of prednisone now ( 4 mg and lower) where adrenal insufficiency can be a problem. I'm curious about how that will go for me. So far so good. The risk of adrenal insufficiency is the reason my rheumatologist wants me to spend a month at each mg decrease. If you're taking 2 months, that's even better.

Yes but it may have something to do with my age too. I’m 76. And the prednisone has pushed me from osteopenia to osteoporosis. And yes it was prednisone induced. 😕

I started on 60 mg. of Prednisone last July 2024. Beginning of December, I was at 10 mg. and had a flare during the holidays. When I got home, I contacted my rheumatologist and told her I wanted to get Actemra infusions. Started in January and get them every 4 weeks. Now, I am down to 6 mg. a day. My rheumy has me tapering 1 mg. every 2 weeks. I have 3 'good' weeks a month. My energy is back and I can do most things that I used to do before PMR/GCA. About 3 days before my infusion appt., I start getting my aches and headaches and am more tired. For 3 days or so after my infusion, I'm a little tired. After that, I'm good to go for 3 weeks. I'm an officer of a non-profit outdoor group, a beekeeper and an avid gardener.

I was diagnosed with GCA in March 2025. Stated immediately on 60 mg prednisone for one week then 50 mg for 5 weeks and now at 40 mg. Started Actemra infusion today. Having a rough time with the prednisone side effects and somewhat discouraged to read how long it takes to get off it. I hope Actemra helps.

I would say you've gotten past the worst part of the high dose of prednisone. I started at 60 mg per day, and I felt quite a bit better once I got down to 40. It took me 12 weeks to get to that point. I had very bad insomnia and stayed groggy much of the time when I was above 40.

The Actemra should allow you to taper faster and should also help prevent flares.

Thank you for the encouragement jeff97! My doc called this morning to discuss my bloodwork from yesterday’s appointment and reduced to 30 mg now. Hallelujah!

Question: Did you have moon face and did it begin to go down as you tapered?

It's nice you can take such big steps on your taper. My rheumatologist had me step down in 5 mg increments at that level.

I did develop a moon face, even though I'm very thin. I gained a few pounds from the prednisone. The moon face started fading once I got down between 7 and 5 mg per day. It's odd that it faded more on the right side of my face than on the left. The left still has a ways to go.

Egads jeff97. I’m going to believe the left will catch up soon. Can this part of it be any more humbling and uncomfortable? I’m 5’ and have weighed 103ish for
years. Now at 117 lbs😱. Never in my life have I had an appetite like this. For me moon face started 3weeks into the 50 mg.

I had a really raging appetite for the first couple of weeks after I started treatment. I gained about 8 pounds over time, but some of that was needed to get back to my normal weight before PMR and GCA. I'm back at the low end of my normal weight range now, and I'm starting to get a little concerned about losing too much weight. It's hard to judge how much to eat at this lower dose of prednisone (4 mg).

There have been quite a few threads in this forum about weight management. You can search for "weight" to see the discussions.