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PMR relapse symptoms

Polymyalgia Rheumatica (PMR) | Last Active: 8 hours ago | Replies (90)

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@dadcue Are you still on Actemra after being off prednisone?

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Replies to "@dadcue Are you still on Actemra after being off prednisone?"

@retiredphil

I started Actemra on January 1st 2019 for PMR. It took me nearly 2 years to get completely off Prednisone. I have now been off prednisone for 5 years.

My inflammation markers gradually increased along with a gradual increase in my level of pain whenever I went too long between Actemra infusions. However, I wouldn't say that I had a total relapse.

I still do monthly Actemra infusions without any serious side effects. My rheumatologist doesn't want me to stop Actemra for a variety of reasons.

Actemra put PMR quickly into remission but I needed to stay on 3 mg of prednisone for an extended period of time because of secondary adrenal insufficiency. An endocrinologist expected that my cortisol level to be low because of my being on Prednisone for more than 12 years. The only question was how soon my adrenals would recover. Fortunately, my cortisol level rebounded when given enough time. Actemra doesn't suppress my adrenal function like prednisone did. I'm much better being on Actemra instead of prednisone.