There may be ‘standard’ or ‘typical’ cases of PMR and tapering but mine does not seem such a case. My tale may be of interest however as a variation. In brief, PMR began in October 2021 with the usual girdle joint pains in shoulders and hips. The pain was severe but not unbearable. Inflammatory markers were elevated but not extreme. After diagnosis I began daily 15mg Prednisolone in November/December and I have continued on monthly tapering doses until now, at the end of February 2023, when I’m on 1mg daily. I expect to stop at the end of March. Over the entire course of treatment I have suffered the same level of pain on waking from about 2am. It doesn’t seem much different now than it was in the beginning. It feels like fiery wires running from my joints. Always the same, except that it now extends down my forearms to my wrists and hands and to a lesser level, legs and knees. No soreness, tenderness or swelling of joints. (This is not RA.) Inflammatory markers have long been normal. The only thing that helps is rigorous exercise. Road running and gymnasium, shoulder and arm exercises in particular. It took me some time to realise, after the initial PMR diagnosis, that exercise did alleviate the pain: it seemed impossible to imagine as I levered myself out of bed and shuffled off to the kitchen for my 4am Pred dose that I would ever move freely again. And yet, once out on the road and moving the pain was in abeyance. So also in the Gymnasium. The It returns - forearms particularly - in the afternoons when I sit down to read. I take slow release Panadol occasionally for relief. The other distressing effect is exhaustion - which may be an effect of loss of sleep from early morning pain.
Now, when I’m not far off a completed taper I wonder whether Pred did me any good at all. I feel that it has been a year of learning to live with what is now a familiar set of pains, severe in the early hours of the morning, but alleviated once I begin activities. My levels of physical performance are lower than they were before PMR, but not by that much. And I am of course a year older and at 83 expect continuing natural decline.
I’m sure there are better journeys with PMR and Prednisolone than mine. But I do feel that I have been moderately lucky and moderately successful in dealing with this distressing affliction. In my perhaps atypical case, it’s just pain management.