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Prednisone for life?
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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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.
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5 ReactionsThank you! You always have such good advice, and we'll researched. I appreciate you!
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1 ReactionMy rheumatologist also suggested I continue a maintenance dose of 2 mg indefinitely after I had tapered successfully to 0 but had nagging gelling. I decided not to and the gelling eventually went away. I hope PMR is now behind me.
I have been on prednisone (P) on and off for 35 years, mostly on. I went on Kevzara while at 15 mg P and got down to 2.5 mg P, but could not go lower. My recommendation is to stay active, as I have been playing tennis, and maybe this has kept my bone density normal. I am 80 years old.
I think there are many that stay on steroids for life. The feeling is that a low dose is not that bad. The tapering to zero is very difficult for some and the longer your on the steroid almost impossible for others. Even when you get to zero its a slow process for you to ever feel normal. For me getting PMR at 68 and now at 74 its a new normal. I was on steroids for 6 months and my PMR burned out. My wife was on steroids for 4 years for cancer and could not stop. When you to try to get below the 2mg its cortisol withdrawal more than the PMR. That withdrawal mimics PMR pain. It can restart the inflammatory process. The tyenne is to try and hold the Inflammatory process of PMR until you can restart cortisol. I think PMR can be controlled. Its probably up to you to see if you can get off the steroid. I think its worth a try. Long term use of prednisone will leave its mark. Some more than others.