Anyone tried Actemra (Tocilizumab) to treat PMR? FDA approved for GCA

Posted by Mike @dadcue, Dec 29, 2020

I was diagnosed with PMR in 2007 which was in addition to reactive arthritis with recurring uveitis which was diagnosed in the early 1990's. I have taken prednisone daily since PMR was diagnosed. My average prednisone dose over the years was probably 25 mg daily and never less than 10 mg without having a severe flare. I have tried several DMARDs as steroid sparing agents but none of them worked well. I had given up hope that I would ever taper off prednisone.

Twelve years of prednisone has taken a toll and my rheumatologist would say my medical history is "complicated". With that in mind, my rheumatologist asked if I would be willing to try Actemra (Tocilizumab) which I started January 1st, 2019. The past two years have been even more complicated but I was prednisone free for most of 2020.

I would say PMR is in remission however I do have arthritic pain which I guess is due to reactive arthritis and aging. I also experienced a flare of uveitis which had been dormant during my PMR years when I was taking prednisone daily. My ophthalmologist prescribed Humira because she thought it would be a better biologic for uveitis. Actemra worked better for for the chronic pain I associate with PMR so I opted to go back on Actemra.

Has anyone else tried Actemra for PMR? It is only FDA approved for GCA.

Interested in more discussions like this? Go to the Polymyalgia Rheumatica (PMR) Support Group.

Yes, on Actemra now for 1+ year. It helped me "wean off" prednisone faster and now I am in my 16th month on Actemra infusion. It takes about an hour for the infusion. No side affects. Doesn't hurt. My Rheumatologist wanted me off prednisone (steriod)...was on it for a year. Actemra is helping.

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@johnbishop
I have been on prednisone for the past 5/6 yrs because of PMR. My doctor has suggested I try Actemera and wean myself off prednisone. I have had one infusion of Actemera so far without any side effects and am due for my second one in a week. I’m down to 10 mg of prednisone and going slowly with my reduction of it. So far all is good.

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@steph1939 Actemra helped me taper completely off of Prednisone. I tapered 1 mg/month from Jan 2025 to Nov 2025. I am so happy that all of my prednisone side effects went away. I had a lot of them. In addition to the Prednisone, I was able to eliminate 2 other prescriptions that I was taking, due to the side effects.

Actemra helped me get my life back. I didn't feel any improvements until after the 3rd infusion.

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I have been on Actemra for over 1 yr & it has helped. No side effects.

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