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Actemra Infusions
I was diagnosed with PMR and possible GCA in July 2024. In January 2025, I began Actemra infusions, every 4 weeks. I am currently on 6 mg. of Prednisone. When I started my infusions, I tapered 1 mg./every two weeks. Overall, the quality of my life has improved. I felt noticeably better after the second infusion. No more fatigue. I was always very active before PMR/GCA. Since, my infusions, I have the energy to do most everything I was doing pre-PMR. I do get more tired after a day of activity, but I can live with it.
My question is--those of you who are on Actemra infusions, do you still have your PMR or GCA aches? My aches are minimal. I don't know if they're 69 year old aches or PMR aches. I'm just wondering if the aches ever completely go away.
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An update on my Actemra journey. I started monthly infusions in Jan 2025, at 360 mg. They have allowed me to taper off of prednisone completely. I feel better than I have felt in over a year and a half. With the infusions, I had to get baseline bloodwork done and must get them every 3 months. My last bloodwork results showed low WBC and neutrophils. Too low. Over time, each result was lower than the previous. I have had respiratory infections and COVID, since starting the Actemra. I rarely had colds before PMR/GCA.
My rheumatologist is going to reduce my dose to 240 mg., as eliminating Actemra is not an option. I knew when I was considering Actemra, I had to pick my poison. Actemra or continue on prednisone with no guarantee that I wouldn't have a flare. I am happy to off of Prednisone, but I was hoping that I wouldn't have this side effect from the Actemra. (I knew before I started, it could possibly happen).
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1 ReactionI started this discussion thread in May 2025. This update isn't positive. I've been taking Actemra infusions for 14 months. Tapered completely off of Prednisone in early Nov. 2025. Within a month, I had bilateral joint pain return. Knees, wrists and shoulders. I try to stay active with walking, water aerobics, biking, and golf. I just had my 70th birthday. I feel like I'm many years older than this. Before PMR, I was always going 110 mph. I mentioned the pain to my rheumy in Dec. and she recommended taking 2 mg. of Prednisone. I did, but didn't get any relieve, so I went to 3 mg. Still no relief. I made the decision that I didn't want to start the cycle of taking Prednisone again. It took me a year and half to taper off of it (thanks to Actemra). I take extended release Tylenol twice a day, with little relief.
I contacted my rheumy last week and told her I was still having pain issues. She ordered CRP, ESR, and at my request a morning cortisol test. Everything came back within normal limits. No surprise that the CRP and ESR were normal, since I'm on Actemra. I'm at a loss at what to do next. I have a rheumy appt. in May and I'll discuss with her.
Has anyone else experienced this? Off Prednisone and on Actemra, and still have pain.
I'm down to 2.5 mg of prednisone, monthly Tyenne infusions. I started PT because shoulder pain on just one side never got better after 3 months and I couldn't taper the last 3mg. The PT I am doing is unlike any I have ever had - it's holistic and incorporates one hour of exercise every day because my hips were tight and misaligned (who knew!). I went 36 hours w/o steroids to do a cortisol test this morning and shockingly, did not have pain. I plan to keep up the PT, taper the steroids and see what happens!
I think once we have PMR it's easy to assume every pain is PMR.
I am so appreciative of your messages. I have just had my 1st monthly Actemra infusion and about to transition to weekly Tyenne self injections (drug choice is insurance driven). I'll keep in touch how my pred taper goes. I began with 10mg daily with my PMR diagnosis last October. The pred increased to 40mg daily February 23rd with the GCA diagnosis.
God speed to you all!