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Infusion vs injection of tocilizumab (Actmera)
Polymyalgia Rheumatica (PMR) | Last Active: Jul 20 1:07pm | Replies (23)Comment receiving replies
Was diagnosed with PMR 2 years ago and put on Prednisone (20 mgs ... in error, dosage should have been 10). Had an immediate positive reaction but a significant weight gain. So the dosage was reduced and I eventually got an appointment with a rheumatologist who prescribed Tocilizumab by infusion. I found it fantastic, lost the steroid weight and felt very good. However, after 6 months I had a reaction. I have psiorasis which had been dormant and flared up. So, I've been given Infliximab (Remicade) as an infusion. It doesn't work as well, my energy levels are very low and am experiencing joint pain again. My rheumatologist has said that PMR doesn't go away so whatever I take will be long-term. Feeling concerned now about options. Posting here as I'm due a visit to the rheumatologist in the coming week and interested to see how others are managing.
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"I eventually got an appointment with a rheumatologist who prescribed Tocilizumab by infusion. I found it fantastic, lost the steroid weight and felt very good. However, after 6 months I had a reaction."
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Was the flare of psoriasis the reaction that you had? I'm thinking you have psoriatic arthritis in addition to PMR.
Actemra enabled me to get completely off Prednisone for the first time in forever. I have been "prednisone free" for about 5 years. I now do a monthly infusion but I started with Actemra injections on January 1st, 2019.
The first time, I tapered off Prednisone I was on Actemra alone when I had a flare of uveitis. It was completely unexpected because uveitis had been dormant for many years while I took Prednisone daily to treat PMR. My ophthalmologist restarted 60 mg of prednisone and stopped Actemra. It was a sad day.
Humira was substituted for Actemra to treat uveitis but Humira didn't work too well for PMR. I was unable to taper off prednisone again and got stuck on 15 mg of Prednisone. Some difficult decisions were made but I decided it was more important for me to be off prednisone. It was my choice to go back on Actemra with the "understanding" that uveitis would probably recur.
When Actemra was restarted, I was able to taper off Prednisone for the second time. I went from 15 mg to zero in slightly more than a month. Eventually, a monthly infusion of Actemra was started to precisely control my dose. I haven't had flares of anything as long as I do my monthly infusions of Actemra. My side effects from being on Actemra for more than 6 years have been minimal.
According to my rheumatologist, the problem is that it would be impossible to "optimally treat" all my autoimmune conditions with a single biologic. I chose Actemra because it works the best for me. My rheumatologist also said that taking prednisone for the rest of my life wouldn't be the best outcome.