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Actemra Users - wanting to hear about first 90 or so days
Polymyalgia Rheumatica (PMR) | Last Active: Nov 24, 2025 | Replies (5)Comment receiving replies
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.
Replies to "@jabrown0407 When I started Actemra (tocilizumab), it was still patented. Now that Actemra isn't patented anymore..."
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@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.