I first started Actemra (tocilizumab) on January 1st, 2019. I liked the symbolism of starting a new medication on New Years Day. After 10+ years I had given up on ever being off prednisone and I was basically stuck on 10 mg. I met a new rheumatologist who knew my entire health history. I didn't think there were any options because multiple DMARD's had already been tried. I had never heard of any biologic for PMR. I still remember our conversation at that visit and it concluded with, "IF -- Actemra was approved would I be willing to try it." I agreed but only because I didn't think it would be approved.

When I started the Actemra injections they were originally ordered every 2 weeks --- "to play it safe" according to my rheumatologist. Nothing much happened for a month or two but I tapered prednisone by 1 mg per month. I don't remember how I tapered after that, The taper was based on symptoms and was about 1 mg per week. I was told to stay at 3 mg pending a consult to the endocrinologist to evaluate for adrenal insufficiency. I waited 3 months for the appointment but the endocrinologist thought my adrenal function was "adequate". That same day I went from 3 mg to 0 mg. The endocrinologist prescribed hydrocortisone just in case I needed it but I didn't need it. The taper from 10 mg to 0 mg took about 6 months total. I was off prednisone for 5 weeks.

The story gets complicated after that because Actemra was stopped for 3 months and Humira was tried because of a different autoimmune problem. I also had to go back to 60 mg prednisone. I tapered down from 60 mg to 15 mg while on Humira but the pain from PMR returned. Actemra was restarted but the dose was increased to weekly injections.I was comfortable tapering prednisone from 15 mg back to 0 mg in 6 more months. I have now been completely off prednisone for 3 months.

I still take Actemra injections every week.

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