Actemra Infusions

I didn't start to feel that much better until I was completely off prednisone. I had to keep telling myself that Actemra was working and I didn't need Prednisone anymore. Actemra takes a while to work and doesn't kick in like prednisone. My improvement was gradual and it took me a year to get off Prednisone after Actemra was started.

Actemra must work because I haven't needed any Prednisone in more than 4 years. Considering I took Prednisone for 12 years to treat PMR ... Actemra is amazing and I never want to go back to Prednisone. I still have some pain but PMR is well controlled. I have other rheumatology problems but PMR isn't a problem as long as I do my monthly Actemra infusion.

Except for some mild side effects, I haven't had any side effects from Actemra.

I didn't start feeling any improvement until after my second infusion. That's when my energy levels came back. I have read that it can take quite some time for some individuals, to feel the results. I'm finding that I can taper my prednisone, without a flare up. I started my infusions in mid-January 2025 and I was taking 15 mg. Today, I am at 5 mg. As I mentioned, I still have some wrist aches and occasional, brief headaches. I have 3 good weeks a month. A few days before the infusion appt., my pain and tiredness increases. A few days after, I'm tired. I get a lot done in those three weeks!

Hi LinaXYL,
Just had to reach out to say that I have had about the same response as you to Actemra. I started monthly infusions in December 2024 but had to switch to weekly injections because my veins couldn’t handle the infusions. I have done well on injections but still have not seen dramatic improvement with my PMR symptoms. I still think that Actemra has been worthwhile because I have been able to successfully taper Prednisone without increasing my Sed rate and CRP. That was an ongoing problem before we added Actemra. I am now at 10 mg Prednisone and my inflammatory markers are finally normal. Previously I could only taper Prednisone .5 mg at a time and was stuck at 17 mg for 6 months. I pray that my PMR symptoms will improve more dramatically but I am thankful that it is allowing me to taper Prednisone. Prayers that we both see dramatic improvements in our PMR symptoms in the future! ❤️

Just documenting my experience (I am 81) and....PMR came on in Oct. 2023 after a severe sore throat and cold and by Nov. 2023 was started on 20mg prednisone by Gen. Practitioner. (Was on prednisone for 1 year + 2 months). Was trying to wean down 1 mg. every 4 weeks....which worked until I got to 6 mg. and had a flare up/relapse. I finally got to see a rheumatologist and he said, if we start the Actemra infusion - once a month (takes about 1 hr.), I can wean down 1mg of prednisone every 2 weeks - instead of 4 weeks....which I did until I was off of the prednisone entirely. I believe my side effects from prednisone were weight gain and sometimes insomnia. On Actemra (the dose is prescribed by weight) and I have noticed fluid retention in legs (haven't had ankles since Oct. 2025 - after two Actemra infusions) I've been in therapy for close to 4 months....I seem to be losing muscle or nerves in legs - hard to do stair steps without pulling myself up....using a cane so I don't fall (I have taken two hard falls since Dec.) I don't feel strong enough to keep me from falling. We are doing EMG on legs to find out if there is any muscle or nerve function damage. Was it the prednisone? Is it the Actemra infusion? No one knows. Hope to find out soon....as I am active...golfer, gardener, walker (usually 7,000-8,000 steps per day) I waddle now and I am unstable, so I use the cane.

I'm sorry to hear about your muscle loss and balance issues. I haven't experienced any of these symptoms. Has your GP suggested physical therapy? I hope you get answers. I know how hard it is to be out of commission, due to this disease, especially since you are active. I have read many posts on this forum of healthy and active individuals, who were stricken with PMR/GCA. Doesn't make sense, does it? I went from going 110 mph to 10 mph, last spring and summer. I feel like I'm up to 60 mph, now. But, I have to rest a lot more after 'busy' days.

I've been in therapy for approx. 2 months.

You posted somewhere about your tapering schedule once you were on Actemra but I can't find it. I am getting monthly infusions of Tyenne after 2 years of steroids and Methotrexate not being able to get me before 10mg of steroids. I started feeling the good effects of Tyenne within a week of my first infusion and am scheduled for my third one this week. I'm asking about your taper schedule because I'd like to go as fast as safely possible. My rheumy wants me to just drop by one mg every two weeks - which seems too slow to me! I know everyone is different but I'm feeling great and impatient to leave the steroids behind!

*below, not before

I didn't have any taper schedule when I started Actemra. It mostly depended on how I felt. It was complicated and it took me about a year but I eventually tapered off Prednisone.

My only instruction from my rheumatologist was "try" to taper off prednisone. However, if I could only get down to 3 mg, that would be good enough.

From 10 mg, I tapered by 1 mg per month for the first 3 months down to 7 mg. I didn't feel different other than I didn't feel any worse on 7 mg. I didn't realize that not feeling any worse was different.

I received some negative comments about Actemra that weren't supportive of taking Actemra for PMR. I was discouraged because I wanted Actemra to work. People said that I should simply stay on Prednisone for the rest of my life if I needed to.

When I was on 7 mg of Prednisone, I decided to get the "inevitable flare" over with. I tapered by 1 mg per week expecting to have a flare. Nothing happened although I got very nervous when I was at 3 mg. That was when I reported to my doctor that I was on 3 mg. I wanted to know what I should do next.

My doctor was surprised that I was on 3 mg so soon. The only noteworthy thing about my symptoms was how tired I felt on 3 mg. My doctor wanted to check a cortisol level before I tapered any lower. The result of my first a.m. cortisol level was low. I was told to stay on 3 mg until I could be seen by an endocrinologist. I wasn't seen by an endocrinologist until 6 months later.

I didn't exactly stay on 3 mg on for 6 months. I did several things with my Prednisone dose. I skipped days once in a while. I also did "countdown tapers" during some weeks, I did 3 mg -2 mg -1 mg - zero before going back to 3 mg again. By the time I saw an endocrinolgist, I was pretty sure PMR was well controlled. For the most part, I was on 3 mg of Prednisone for 6 months with the exception of the skipped doses and countdown tapers. Nobody instructed me to do that and I supposed to stay on 3 mg.

The endocrinologist was very interested in my "skipped doses" and "countdown tapers.' She asked me if I needed Prednisone for PMR. I said that I didn't think so. Before stopping Prednisone another cortisol level was rechecked. My second cortisol level was described as "on the low side but adequate."

What surprised me the most, was when the endocrinologist said 3 mg was such a low dose, I could simply stop Prednisone and no taper was needed. Since my cortisol level was adequate and PMR was well controlled, I was told to try stopping Prednisone. The only stipulation was that I needed to let the endocrinologist know if "anything happened."

Something happened when I stopped prednisone the first time. I ended up on 60 mg of Prednisone again. It wasn't anything catastrophic. I had a flare of a different autoimmune condition that wasn't PMR ... it was something else entirely. I had a massive flare of panuveitis which wasn't anything new except those flares stopped during the time I was taking Prednisone daily so the last flare of uveitis was 12 years prior.
https://my.clevelandclinic.org/health/diseases/panuveitis
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Part 2
An endocriologist, a rheumatologist and opthalmologist all were involved after the flare of uveitis. Actemra was stopped and a different biologic was tried. The flare of uveitis went into remission but I was stuck on 15 mg of Prednisone again along the other biologic called Humira. That combination didn't seem to work well for PMR because those symptoms returned

When I said that I wanted to try Actemra again because it worked the best for PMR -- my rheumatologist agreed to restart Actemra. The second time I tapered off Prednisone while on Actemra ... I went from 15 mg to zero in less than 2 months. No fancy taper schedule was needed the second time I tapered off prednisone. I did a fast taper from 15 mg to zero in less than 2 months. My cortisol level was checked one more time before tapering of Prednisone completely and it was still adequate.

My opthalmologist didn't think Actemra would prevent flares of uveitis. My Actemra infusion dose has been adjusted a few times but so far I haven't had flares of anything for about 5 years. I still do monthly infusions of Actemra.

Thank you so much for your comprehensive answer. In fact, I'd like to thank you for all of your wonderful posts. You are always so thoughtful and you do your homework. I appreciate you!