I have been reading your forum since I was diagnosed with PMR just over 2 years ago. I have found it incredibly informative, helpful and comforting, but this is my 1st post. I was diagnosed with PMR after a couple of months of extreme pain and stiffness in the neck, shoulders hips and knee, to the extent that the simplest everyday movements were difficult and painful. This was essentially a self- diagnosis, confirmed by blood tests showing raised inflammation levels. I was prescribed Prednisolone (starting at 15mg, reducing to 12.5, 10 etc). The steroids gave almost immediate relief. Over time and on doctor’s advice I have reduced to almost zero dosage. Regular blood tests (every 3 months or so) have been normal, apart from raised levels last June, when I upped the dose to 5mg. However for the past few months I have had increasing pain and stiffness in my neck and shoulders and more recently my right hip and knee. Turning my head is quite painful and I feel that I am moving like someone 20 years older. I am concerned that this could be a return/ relapse of PMR.
In October (2023) I finally got to see a rheumatologist, had more blood tests and x rays. This showed that bloods and inflammatory markers were normal, but bilateral AC joint arthritis in the shoulders and cervical spine. The advice was to manage ‘conservatively with painkillers and physio’ as the symptoms appeared more osteoarthritic than PMR. It is the case that the only thing which seems to ease the pain is Naproxen, which I take for 4 -5 days with a break until I can’t bear the discomfort any longer. I’m not happy to take NSAIDs long term and I am now thinking of acupuncture and massage. I do 30 mins of stretching and yoga type exercises every morning as well as those advised by the physio, though this can be hard with the stiffness.
My concern is whether it is just OA, which perhaps the steroids were masking or residual PMR or both. Certainly when my initial PMR symptoms started Naproxen did nothing (I understand that pain killers are ineffective with PMR). However, there seems to be a link between my steroid tapering and increased pain and stiffness. My acupuncturist has suggested a DEXA scan as my bones may have weakened and this may be making the OA worse (?). A DEXA scan a year ago was fine.
Any thoughts please?