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Anyone tried Actemra (Tocilizumab) to treat PMR? FDA approved for GCA
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.
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Woohoo indeed!!! Being an advocate for your health can pay off. Hoping for an update and success of getting your PMR into remission.
Yes, I will definitely keep you updated on my progress.
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2 ReactionsHi all..anyone here know anything about this drug? I am going on this next week...
Hello @dontknowitall53, You will notice that we moved your post to an existing discussion on the drug Actemra (Tocilizumab) so that you could meet other members like @pmrhater, @dadcue, @mgrogers, @labbadia1, @minijohn and others who may have some information to share on the drug. If you click the link below it will take you to the top of the discussion so that you can read through the posts by members discussing the drug.
-- Actemra (Tocilizumab) to treat PMR??:
https://connect.mayoclinic.org/discussion/actemra-tocilizumab-to-treat-pmr/
Is your doctor prescribing Actemra (Tocilizumab) to treat PMR, RA or another condition?
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1 ReactionI have been taking Actemra (tocilizumab) for almost 4 years. I have been mostly off prednisone for about 3 years. Actemra was prescribed for PMR but my rheumatologist needed to seek approval.
I was treated with prednisone for nearly 13 years and never could taper off. I tried several DMARDs which helped some but ultimately were stopped due to side effects. I now only take Actemra
I started with Actemra injections every two weeks which initially allowed me to taper off prednisone in 7 months. Actemra has controlled my PMR symptoms.
I haven't had any significant side effects from Actemra. My dose of Actemra has been adjusted several times. My pain returned gradually whenever Actemra was stopped.
I am currently doing a monthly infusion of Actemra.
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4 ReactionsI don't have much information for you as I just started on Actemra last Friday. No side effects so far and of course no idea if it's helping yet.
I'm supposed to reduce my Prednisone by 1 mg every two weeks starting two weeks from the first injection (which are also every two weeks).
Good luck to you!
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1 ReactionJudy here- I've been taking monthly actemra infusions for 6 months. Much improved symptoms and able to taper to 4 of prednisone and 4 tabs of methotrexate... hope to get off all but the actemra but it's a slow process for me. Hope this helps!
I have been on Actemra for six months. It has allowed me to taper to 1 mg of prednisone and put my PMR into remission after four years! Wonder drug for me.
Best wishes!
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1 ReactionThank you
Thanks