I know that it’s scary, and I worry about side effects to medication too, but I try and remind myself that risks of the inflammation and impact on quality of life from untreated and under-treated PMR are as bad or worse than the risks of taking a low to moderate dose of prednisone long term.

There are a lot of completely valid warnings about prednisone, I think to prevent people from over-using it because it can resolve so many symptoms of so many things and quickly. But it is the indicated treatment for PMR; if you’re diagnosed with PMR you’re taking it because you need it.

There are ways to manage the potential risks of bone loss and impact on blood sugar from prednisone for PMR, whereas there are very few alternatives to prednisone for PMR. And untreated PMR, we know can cause severe pain and fatigue (which if not treated well can lead to chronic pain even after the condition has resolved), there’s the risk of GCA which can increase risk of stroke and lead to blindness… And having an inflammatory arthritis that’s not treated well can actually cause eye inflammation (uevitis), which is a symptom of GCA.

I try to remind myself those things are scarier to me than the risk of possible preventable bone loss and elevated blood sugar.

10 mg or less is considered a low dose, and it’s great that you made it into single digits. It can get harder and you might have to go back and forth for a while and find the lowest dose you need to manage the inflammation. Per my father’s dietician, 10 mg or less of prednisone if he can ultimately get to that low of a dose will not have much of a concerning effect on his nutrition and blood sugar, but everyone has different risk factors.

If your doctor or rheumatologist is experienced with PMR, are you able to talk to them about your concerns and your symptoms for help adjusting your dose?

With PMR (at least from my family’s experience), we have to defer to the symptoms as the guide to the taper, even if we want to go more quickly, and as frustrating as that is. i.e. If my dad has a prolonged flare, we have to pause the taper and sometimes go back up again until he’s back at his baseline pain before trying to reduce again, and sometimes more slowly.

Wishing you all the best. I know it’s tough.