Actemra Infusions

I have been on Actemra for 6 years and have done Actemra infusions for the last couple of years. My quality of life has greatly improved since I tapered off Prednisone. I have been Prednisone free for the last 4 years and counting.

I can't say my quality of life was good when I needed Prednisone for 12 years. Prednisone was great at the start of PMR but there was an insidious decline in my overall health and well being after a couple of years on Prednisone. I'm jealous that you started Actemra so soon.

The pain hasn't ever gone away completely for me. The thing that made it better was being able to decide what was PMR and what wasn't PMR. That was better than treating everything with Prednisone and never being able to taper off.

Just so you know ... it wasn't easy to taper off Prednisone after Actemra was started. I had underlying adrenal insufficiency from long term Prednisone use. That felt like PMR too until I was able to taper off Prednisone. That was when my energy improved. It took me about a year to feel like I was able to do some of the things I used to be able to do. Unfortunately, being off Prednisone exposed all the arthritic aches and pains that I still have. My rheumatologist is still involved with my care and says I have a wide range of rheumatology problems.

Thank you for sharing your experience. In the whole scheme of things, I haven't been on Prednisone for very long (10 months). My goal is to eliminate Prednisone from my life. It was yours and others who gave me the knowledge about the benefits of Actemra. My rheumatologist was pushing Kevzara, but my insurance does not cover it. She did mention that I "haven't been on Prednisone for that long". Six months was long enough for me and I didn't see any benefit for waiting. It didn't take much for me to convince my rheumatologist to prescribe the Actemra infusions. I am grateful to this community and the experiences that people share about PMR. The knowledge gives me control over my situation.

I'm not sure about Actemra giving back control. In a way... prednisone takes control. Prednisone isn't addictive but my body developed a "dependence" on me to take prednisone every day. I had to replace the cortisol my body needed. I had no idea how much prednisone I needed to replace the cortisol. I only knew that I needed more prednisone whenever I had more pain. I didn't know what was causing all the pain but I suspected it wasn't only for PMR.

It became impossible for me to know how much prednisone I should take every day. I had a discussion with one of my doctors once. I asked how much prednisone I needed and he seemed perplexed. Then he said it was a million dollar question because nobody knows the answer. At least with Actemra ... I don't worry about how much prednisone to take every day. I worry about being on Actemra but my doctor controls my infusion dose and I don't want to control that.

If you ask me, 10 months of prednisone is long enough. You are at the dose of prednisone when it is more challenging to reduce your dose. I hope that Actemra will make it easier for you to taper off prednisone.

I’m on Actemra self injecting every other week. After 3 injections I have reduced prednisone to 3 mg consistently. I also notice less right temporal headaches which is my major concern. Joints move easier. But still have age related aches and pains. Keep moving and don’t fall down.

I was diagnosed with GCA in March 2025 and started 60 mg prednisone for one month and have tapered down 10 each month
- now at 30. Having terrible side effects from the prednisone. Had first Actemra infusion last month and felt a tad better. Second infusion is next week. I’m encouraged you felt more energetic after second treatment. Yeah! I hope I have the same reaction. I am very active for 74 but now I have to pick and choose what I need to get done each day and my breathing is labored.
As far as your question, my GCA headaches, scalp tenderness and majority of jaw pain stopped within two days after starting the prednisone. I want off prednisone yesterday! I am so thankful I discovered this support group.

I just started Actemra infusions and am quite hopeful after getting more information about the drug online. I was curious about how it differs from Kevzara since both target the same IL-6 pathway in the immune system. Kevzara is a human monoclonal antibody while Actemra is a recombinant monoclonal antibody. Basically that means that the genetic material in Actemra has been manipulated in a lab to make it more effective. Looking at the clinical trials of both, 28% of PMR patients on Kevzara were off prednisone and had no symptoms after a year. 56% of GCA patients taking Actemra were free of symptoms and off prednisone after a year. I read that in England the National Health Service only allows GCA patients a year on Actemra due to cost. After that year about 50% are OK without it. The odds look better with Actemra than with Kevzara. I did the Kevzara shots for 8 months and they helped but I could not get below 5 mg of prednisone. Of course this is a very simplified view I'm presenting and doesn't take into consideration the possible side effects, etc.

Don't forget there are now 3 biosimilars to Actemra.
The FDA has approved three biosimilars to Actemra (tocilizumab):
Tofidence, Tyenne, and Avtozma.

I almost forgot ...A new medication, upadacitinib (Rinvoq), has been approved in 2025 by the FDA for the treatment of giant cell arteritis (GCA) in adults. It's an oral Janus kinase (JAK) inhibitor.

"Recombinant monoclonal antibody" technology is way over my head. I was told Actemra was derived from the blood of a mouse. That made me think Actemra wasn't a good idea but I got over it. Actemra works extremely well for me with no discernible side effects.
https://www.biointron.com/blog/what-are-recombinant-monoclonal-antibodies-a-biotech-primer.html#:~:text=DOI%3A%2010.1533%2F9781908818041.357,agents%20to%20target%20an%20antigen.
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Unlike the good people in the UK, I have used Actemra for 6 years to treat PMR. My symptoms return when I don't do my monthly infusion. My rheumatologist has no plan to stop my Actemra infusions unless Actemra stops working. At this stage, my rheumatologist said something about "immune system memory" and it is unlikely that my autoimmune conditions will ever go away.

Some of my Prednisone side effects have improved but not all of them. My rheumatologist doesn't think Prednisone is good for me anymore. He says Actemra is better for me. I would wholeheartedly agree!

I've just started Actemra infusions - had 2 so far. I'm tapering prednisone and down to 4 mg. I thought I would feel better but I really do not. Still tired, weak, have the shoulder and arm and hip pain. I'm continuing to taper even though I don't feel better, hoping the Actemra will kick in and do something. Did y'all feel an immediate improvement when you started infusions?

Diagnosed with GCA Jan 2025, started 60mg Prednisone, and Actemra monthly infusion end of Feb. Reduced Prednisone from 60, 50, 40, 30, 20, two weeks each, now reducing 2.5 mg for one month each. Now, just finished fourth Actemra, and now at 17.5 Pred. All symptoms resolved, energy and exercise much improved, but really ugly Pred bruising on forearms still happening. Doc says Pred will decrease to 0, hopefully, but not until maybe December, at present rate. Actemra to be for 1 year, perhaps longer if needed. It’s a waiting game for sure, but life is getting better each month.