PMR: glad or bad tidings? Save

“Life was turned upside down overnight” – PMR patient. 

Please don’t tell your patient that PMR “typically” lasts two years. Because it probably won’t last exactly two years, and then they’ll be less inclined to believe other things you say. According to real-world data from the UK, one in four patients with PMR is prescribed steroids by their primary care physician for over four years.[1] But nobody tells them this at the start, and that causes big problems later on.

Imagine you’re a patient newly diagnosed with PMR. In this imaginary universe, after many months of suffering - during which you visited the doctor multiple times - you’re finally taking steroids and you feel almost normal again. Finally, you can get on with your life! You look forward however to being able to stop steroids, which are causing you considerable difficulty with your sleep. 

How long is the treatment course? you ask.

Well, says the physician truthfully but not quite answering the question, on average patients with PMR need steroids for two years. They smile brightly, as if they’ve just given you the best news in the world. 

Two years! You are shocked. That evening you google it, just to check, and the medical websites seem to confirm it: “PMR typically lasts one to two years.” ChatGPT says the same. 

Two years. Maybe anything can be endured for two years. Some things do puzzle you, though. For a start, you’ve never broken a bone in your life, but for some reason the doctor has prescribed alendronic acid, calcium and vitamin D supplements, which all seem to be treatments for osteoporosis, not for PMR. You are pretty sure you don’t have osteoporosis. You read the list of possible side-effects in the package insert, and you decide you will not take those extra medications. You feel you are getting quite enough side-effects from the steroids already: any more side-effects would be too much to bear.

But as you pass the hoped-for two year anniversary, you realise something is wrong: you still can’t stop those last few mg of steroids without the pain returning - almost as if it never really went away, but was only ever masked by the treatment. If two years is typical, does that make you “atypical”? Was the initial diagnosis wrong? Or did you do something wrong? You feel like a failure. Family members tell you “The PMR is gone! You’re addicted to prednisone!” This makes you feel even worse. 

You go back to the doctor. Now they tell you there are steroid-sparing treatments you might have had, but as you’re now on a lower steroid dose, they’re not sure you ought to have them at this point. 

You begin to lose hope.

You feel angry.

Things don’t make sense.

In another universe, you take steroids for two years without any return of PMR symptoms and then stop on schedule; but afterwards you always wonder if you could have stopped them earlier, like your family told you that you should have. You look back at photos of yourself from that time, reluctantly posing for an unforgiving lens, and you feel angry. On what basis was that two years decided for you? Things don’t make sense.

In yet another imaginary universe, you are referred promptly to a rheumatologist who confirms you have “uncomplicated” PMR and prescribes a steroid taper based on the rheumatology guidelines. In practice you find the regimen very complicated, not to mention frustrating whenever the dose drops and you feel worse. Also you feel exhausted all the time. The rheumatologist does some x-rays, points out areas of osteoarthritis, and tells you the steroids have been masking your osteoarthritis pain. At eighteen months you stop prednisone and with that comes the end of your rheumatology visits. You stay positive, and resolve to manage the osteoarthritis pain with regular walking, but over the next four months you feel increasingly achy and stiff. Your blood tests remain stubbornly normal; your primary care practitioner tells you that you’re two years older now than when you started steroids - but you feel as if you have aged a decade. You feel increasingly depressed. Things don’t make sense. Then you begin to experience temporal headaches that become increasingly persistent and severe, and then you begin to experience jaw aches when you chew your food…

I’m grateful to psychologist Prof Hilary Bekker for introducing me to the Leventhal Common-Sense Model of Illness Representations [2] - in which a vital piece of information a patient needs to make sense of illness is Timescale – along with explanations of causes, consequences and cure-control options. With only partial information, a patient can’t make sense of the situation in a way that leads to good decisions. 

What could have gone differently for our imaginary patient? Maybe, sleep-deprived as they were, there was only so much information they could have taken in on that day. Maybe some written information might have helped; but also, some follow-up support for them as a person – that might come from a specialist nurse, maybe, or patient support groups. 

During our PMR Voices 2021 project, one of the things I was surprised by - but in retrospect, really shouldn’t have been - was that the medical encounter which patients recalled best, and wanted to talk about most, was the one at the time they were first diagnosed. 

So please make sure that first consultation is a good one. It’s probably your best chance to give patients the essential information they’ll need to make sense of this perplexing, seldom-spoken-about illness we call PMR. Including a realistic timescale of how long it will last.  

Acknowledgements
I would like to thank everyone who kindly provided feedback on an earlier version of this blog post: Eileen Harrison, Lorna Neill, Margaret Grover, Dianne Wloch, Dr Hanif Ismail, Ms Amy Rebane, and Professor Hilary Bekker. 

References

1. Partington RJ, Muller S, Helliwell T, Mallen CD, Abdul Sultan A. Incidence, prevalence and treatment burden of polymyalgia rheumatica in the UK over two decades: a population-based study. Ann Rheum Dis. 2018 Dec;77(12):1750-1756. doi: 10.1136/annrheumdis-2018-213883. 
2. Leventhal H, Phillips LA, Burns E. The Common-Sense Model of Self-Regulation (CSM): a dynamic framework for understanding illness self-management. J Behav Med. 2016 Dec;39(6):935-946. doi: 10.1007/s10865-016-9782-2.