Kim from the United States asks: Many years ago, I was diagnosed with polymyalgia rheumatica when I could not turn over in bed and my ESR was elevated. I was treated for many years with what ended up being 5 mg of prednisone per day. Several attempts to quit taking it failed and my rheumatologist said that some patients have to take it for years. I moved two years ago and my new rheumatologist made me stop taking prednisone because I no longer had an elevated ESR. This has really affected my health and I live in pain without it. I have been off prednisone for about six months and my life quality is greatly reduced. I am otherwise pretty healthy with no heart disease or diabetes. I don’t understand why this is such a big deal to my doctor. Do you have any advice for me?
In general, the risks of prednisone are significant, as you can read here. Those risks increase with higher dose of prednisone, but also for how long someone takes prednisone. Of course, the balance is the quality of life prednisone, or any treatment, can provide. While PMR classically presents with proximal muscle pain around the hips and shoulders associated with an elevated ESR, this does not need to be the case. In situations like these, which apply to PMR but many rheumatic diseases, speaking to your rheumatologist so you are both on the same page is worthwhile. Does your rheumatologist believe there is a different cause for pain now and if so, discuss a new treatment approach that will be effective for this pain? If it is still PMR, can your rheumatologist discuss other options that are available that may be effective at treating PMR but without the need for prednisone? These can be common situations and often the opportunity for clear communication helps so everyone is on the same page.
Posted: November 4, 2018