I had very little success tapering off prednisone during my 12 years years of being treated for PMR with prednisone. You are not alone because it is very difficult to taper off prednisone after long term use. The difficulty becomes more apparent when your prednisone dose reaches single digits.

There are several factors to contend with. The first factor being that PMR might still be active. Less than 10 mg of prednisone may not be enough to control the symptoms of PMR because it is a chronic condition which doesn't go into remission very easily. How soon PMR goes into remission is anyone's guess ... some rheumatologists say a year or two but my rheumatologist didn't have any timeline for me to be off prednisone.

Never assume that it is only PMR you are dealing with. I had some other autoimmune problems in addition to PMR. That combined with some other medical problems explains my long term use of prednisone. I was never able to maintain a prednisone dose of under 10 mg. Methotrexate and Leflunomide were used as steroid sparing medications. They were somewhat helpful when used in combination with prednisone.

I was able to taper off prednisone and have been off for about 3 years when a biologic called Actemra was tried. My PMR symptoms were controlled with the biologic but other symptoms emerged when I got to approximately 5 mg and worsened when I continued down to 3 mg. An endocrine consult was obtained and I was found to have adrenal insufficiency. It took more time and perseverance to overcome adrenal insufficiency.

It becomes a personal decision about how to deal with the symptoms of adrenal insufficiency that is caused by long term prednisone use. Some people need to stay on a maintenance dose of prednisone for a long time and sometimes for the rest of their life.

I elected to follow the advise of an endocrinologist even though the general advice was to increase my prednisone dose. My endocrinologist encouraged me to remain on a lower dose of prednisone to give my adrenals a chance to recover. It took about a year for my symptoms of adrenal insufficiency to improve.

When my cortisol level improved, the endocrinologist said it "might be safe" to stop prednisone. When I stopped prednisone another autoimmune condition flared up. I needed to go back on 60 mg of prednisone again for a couple of months but I tapered off quickly again after that.

The cortisol my adrenals are producing is now adequate and regulates inflammation and other things better. That was made possible with a biologic that doesn't suppress my adrenal function.