Actemra and prednisone

@sassysaveur

I was diagnosed with PMR in Feb 2025 and then GCA in Nov 2025. I had already been on various doses of Prednisone for several months before diagnosis due to groin and hip pain. Started with 60 mg prednisone Feb 2025 and tried to taper in July 2025, but not successful so I stayed on 60 mg. Started Actemra weekly injections in Nov 2025, then went to Tyenne for a few months. Went back to Actemra July 2026. Successfully tapered from 60 mg prednisone starting Feb 2026 and ending late April 2026. Although I still experience some pain and discomfort, inflammatory markers are “reasonable” so I have not had to go back to prednisone. I would rather deal with the pain than take the prednisone.

@sassysaveur

I have several autoimmune conditions so not only PMR. My other autoimmune conditions flare up when Actemra is stopped. As long as I stay on Actemra nothing flares up.

I don’t think PMR is the problem anymore. Nothing remotely like when PMR was originally diagnosed but I still have some pain and stiffness.

@sassysaveur I was diagnosed with PMR/GCA in July 2024. Took 60 mg. of pred. for 6 weeks, before starting a slow taper. In December 2024, I got down to 10 mg. of pred. and had a flare. I asked my rheumy to put me on Actemra infusions (Part D insurance wouldn't pay for injections). Started monthly infusions in Jan. 2025 and continued a slow taper, which ended in Nov. 2025. I didn't have any flare issues during my taper at the lower doses, once I was on Actemra. I'm still on Actemra.

How often did you lower your dose and by how much when you went down from 10mg?

@dadcue I was wondering, have you or any other people In this group, been able to stretch out your Actemra infusion Schedule from four weeks to five weeks or six weeks without experiencing a flare? I started with a PMR diagnosis but now my doctor feels that it is rheumatoid arthritis. The infusions have worked extremely well and I have had no side effects. I also have spinal stenosis, which is its own issue, but I can tell the difference between some pain and stiffness from the stenosis versus what I had back when I was first diagnosed with PMR . The dose I take right now is a higher dose than what I started with, and that’s exactly what I needed to get rid of all the pain and stiffness and also be able to stay off of other medication’s.

@ldietz
Hi, if you dont mind me asking, why did you go from actemra to tyenne then back to actemra?
i am on tyenne, six months now, insurance would not approve actemra
thanks Ellen

@mun68

My Actemra infusion schedule is very flexible. My infusion is ordered every 4 weeks but I have done an infusion anywhere from 3 weeks to 7 weeks. When I did an infusion at 3 weeks one month I waited 5 weeks to do the next infusion so it averaged out to be every 4 weeks

I have also been off Actemra completely for about 8 months. My rheumatologist didn't plan to stop Actemra but it was necessary because of a supply chain problem during Covid. All available supplies of Actemra were being used for seriously ill Covid patients so I wasn't able to get Actemra.

When Actemra wasn't available, I was started on Humira just to see if it would work but Humira didn't work very well for me. I didn't have a sudden flare up but a gradual worsening of pain and I had to restart 20 mg of Prednisone again along with Humira. After the supply of Actemra improved - Humira was stopped and Actemra was restarted. I tapered off Prednisone again incredibly fast and went from 20 mg back to zero in about a month. I didn't have problems with adrenal insufficiency the second time I tapered off like when I tapered off Prednisone the first time.

The really nice thing about extending the time between Actemra infusions was that I didn't experience any sudden flare or extreme pain. It was only a gradual return of pain coupled with my inflammation markers trending higher. My symptoms and higher inflammation markers happened over a couple of months rather than days or overnight like when I took Prednisone.

@elleninz
I went back to Actemra because Tyenne was not available. It was a struggle to get the Actemra approved by my insurance. Dr filed an appeal and finally got it approved.

@dadcue thanks! You are a wealth of knowledge… I read your posts all the time. And, I think these Actemra infusions are a miracle drug… And, when I was about to start these infusions about 19 or 20 months ago, I was a nervous wreck over the thought of having an infusion and I had never heard of this drug. I was very concerned about the side effects. Receiving these monthly infusions has allowed my life to return to normal with normal energy levels and the ability to exercise for at least an hour a day.

@sassysaveur I was diagnosed with PMR but not GCA in February 2026 by my PCP, so my highest dose of prednisone was 20 mg. My rheumatologist suggested Tyenne (generic for Actemra) as soon as I had my first phone appointment with her in March, and I started injections every 2 weeks in April. I was able to taper off prednisone entirely by mid-July, and spent 2 weeks at each level of tapering (decreasing by 2.5 mg until under 5 mg, then by 1 mg every week). I wasn't at 60mg and my course of prednisone was relatively short, so may not compare to your experiences.

I have also seeing an acupuncturist every 1-2 weeks during the taper and after, who treated me for general inflammation, swimming w a sauna 4x a week and doing my best at an anti-inflammatory diet. I haven't had a flare, but am still on tocilizumab (Kaiser's current brand is Avtozma). What I did notice-- on the positive end- is how much calmer and less fuzzy my brain felt when off prednisone entirely, and on the negative, that minor aches and pains in my hands returned, but not in my shoulders or hips (where I had the pain when first diagnosed). Saw PCP for hand aches and pains, had a workup and it seems like that is osteoarthritis and not either a flare of PMR or rheumatoid arthritis. I don't know how long I will be on the injection, and the rheumatologist is unwilling to predict.

I am grateful that I have been quite lucky in taking prednisone, access to tocilizumab and not having a flare on tapering, and wish you the best.