Prednisone for life?

Posted by pdxmac @pdxmac, 9 hours ago

After 31 months on steroids, plus Tyenne infusions (similar to Actmera) I've been able to taper down to 2mg. But I've been stuck there for months. The rheumatologist is telling me that I may need to take it forever. I'm in denial and don't want to accept that. I've never seen anyone on this forum say anything like this - is it true that for some PMR never goes into remission?
In general I've got most of my life back. Just run out of energy easily and morning stiffness and sometimes pain.
Please advise.

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Mike | @dadcue | 7 hours ago

It was suggested that I stay on prednisone for the rest of my life on another PMR patient forum. I was on 3 mg of prednisone along with weekly injections of Actemra. I took prednisone daily for 12 years to treat PMR and had a low cortisol level. Fortunately my rheumatologist, ophthalmologist and endocrinologist didn't think prednisone for life was a good outcome. They encouraged me to keep trying to taper off prednisone and ultimately I succeeded. Now I have been off prednisone for 5 years. I would also encourage you to keep trying.