Actemra Users - wanting to hear about first 90 or so days

I have been on Actemra for almost 7 years. In comparison to my prior 12 years of prednisone ... there is no comparison. My overall health, well being and quality of life are much better on Actemra. Needless to say, I'm a fan of Actemra but there is no reason why Tyenne won't work just as well.

The best way I can describe Actemra is how it works behind the scenes without all the drama that Prednisone caused me. There wasn't much drama when I started Actemra. I wasn't even sure Actemra was working except that I was able to rapidly taper my prednisone dose. The first 90 days, I reduced Prednisone by 1 mg per month. The next 30 days, my taper was at a rate of 1 mg per week.

I learned more about the long term consequences of Prednisone when I reached a dose of 3 mg. That was when my cortisol level was too low for me to continue tapering off Prednisone. I persevered for another 8 months on 3 mg until my cortisol level improved. Then I simply stopped Prednisone without tapering. My endocrinologist said 3 mg was a low dose. As long as my cortisol level was adequate and PMR was controlled there was no need for me to taper. I went from 3 mg to zero in what I called "leap of faith."

I haven't had any flares since I stopped prednisone except for when Actemra was "interrupted" a few times. Nothing catastrophic happened when Actemra was interrupted except that my pain level gradually increased and my ESR and CRP were on the rise. I had a "pain crisis" every time my prednisone dose got too low until Actemra changed that.

I think the biggest difference that Actemra makes is how it doesn't suppress other critical things like my adrenal function. Systemic prednisone use had a way of shutting down the rest of the show. Predsisone instantly relieved pain at the expense of causing many side effects when other parts of me weren't functioning well.

Actemra is more targeted and works on PMR/GCA and doesn't disrupt other essential body functions. It is hard to know what Actemra does except that it has kept me off Prednisone which is the beauty of Actemra.

I feel normal on Actemra with what I call "normal aches and pains."

PMR was an "abnormal pain" and having "no pain" isn't very realistic in my opinion.

@dadcue Thanks for the insight.
Actemra is being removed from the Medicare formulary lists and replaced with Tyenne which is biosimilar. The difference in insurance coverage in 2026 is Actemra would be over $60,000 while Tyenne will be about $2,700 on my selected policy.
From my research my body should not know the difference, however I have to purchase brand blood pressure meds because I have an adverse reaction to the generic. So we will see how it goes.
I am concerned about a depressed immune system and having to guard against social environments where I might 'catch' something. Have you had problems? And what have you done to manage that side of the drug side effects?

@jabrown0407

When I started Actemra (tocilizumab), it was still patented. Now that Actemra isn't patented anymore there are several biosimilars available in the United States.

Tofidence (tocilizumab-bavi) --- FDA approved in 2023
Tyenne (tocilizumab-aazg) --- FDA approved in 2024
Avtozma (tocilizumab-anoh) --- FDA approved in 2025

The biosimilars didn't have all the research and development costs that Actemra did but they are tested to demonstrate that they are highly similar to Actemra. There weren't any clinically meaningful differences in terms of safety and efficacy.
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I didn't experience any significant side effects from Actemra and I still don't. My neutrophil count was deceased initially but not dangerously low. Actemra isn't believed to destroy neutrophils but it "redistributes" neutrophils. This means the body's total neutrophil count may not be lower, but fewer neutrophils are found in the circulating bloodstream where lab tests measure them. It is an interesting topic.
https://ascpt.onlinelibrary.wiley.com/doi/10.1002/psp4.12534.
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The only other side effect I had from Actemra was elevated liver enzymes. That was believed to be caused by fatty liver disease. I gained a lot of weight when I was on Prednisone. Now my weight has decreased and my liver enzymes are normal again.
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I don't take any major precautions to guard against social environments where I might 'catch' something. I wash my hands and the usual precautions that everyone should take. I just finished a 6 week trip where I flew to Hawaii. I then did a 20 day cruise to Sydney, Australia. While in Australia for a week, I did several excursions on crowded buses and ferries. I didn't get any infections but I needed to fly home to get my next Actemra infusion. I didn't have a relapse but going 6 weeks without an Actemra infusion was pushing my limit according to my rheumatologist.

@dadcue

I just remembered an excursion on a crowded boat to go whale watching in Australia. It was amazing because we saw a few whales. The highlight of that excursion was the "rough seas" and everyone was getting seasick. The ocean was really rough so I don't blame anyone for being sick.

I was toward the back of the boat with nobody around. I just sat there while everyone else was vomiting or otherwise they moved inside the boat so they wouldn't get wet. One of the crew members on the boat checked on me numerous times to make sure I was okay. I just laughed because I was only afraid of falling down if I tried to stand up.

The crew member said he had sea legs and would help me if I wished. I declined the offer and said I would be okay. I had a great time all by myself and I never got sick. That was the only time I socially distanced myself. I didn't want to be anywhere near all the people who were seasick,

I got drenched when a big wave splashed me a couple of times but otherwise I was fine. We made it back safely and the entire boat crew offered to help me off the boat. I accepted some help to get off the boat because of my age and because my legs aren't so good. They all laughed when I said that I have more difficulty walking on land than I do sitting on a boat in the ocean.

I have been on monthly Actemra infusions, since Jan 2025. I didn't even know if it was working in the beginning. At the same time, I was decreasing my Prednisone 1 mg/month. I was on 10 mg. when I started the infusions. After about 3 months, I felt my energy level increasing. After 6 months, I was doing all the activities I curtailed when I got PMR/GCA. I still had some minor pains, mostly both wrists and my knees. My knees still ache, but the wrist pain went away a few months ago. I am so happy that I am off the Prednisone. I feel and look better.

My WBC and neutrophils have been decreasing since I began the infusions. After my quarterly bloodwork, two weeks ago, my rheumatologist decided to lower my dosage in future infusions. He had originally planned on me staying on my current dose of 240 mg. until January 2027, then he would taper my dose down. I have gotten sick more than I did before PMR/GCA. I never used to even catch a cold. In July, I got COVID for the first time. I went on a trip to Iceland in October. I masked up on the plane and on the tour bus. I still managed to get a respiratory infections, which took about 3 1/2 weeks to get over. I don't like having the fear that I am going to get sick, when I am in crowded areas (restaurants, grocery stores). Depending on crowd levels, I mask up at the grocery store. Fortunately, I winter somewhere warm, so most activities take place outdoors, including dining.

Since, I get my infusions in a 'medical setting', Medicare pays for them. My Part D insurance would not cover home injections. Good luck to you.