Connect
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.
Like
Helpful
HugInterested in more discussions like this? Go to the Polymyalgia Rheumatica (PMR) Support Group.
Connect
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.
-
Like -
Helpful -
Hug
4 ReactionsThank you! You always have such good advice, and we'll researched. I appreciate you!
-
Like -
Helpful -
Hug
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.