Management | Lack of alternatives to glucocorticoids | ‘The lack of other options, really … and that nothing else does seem to work particularly well for it, and ‘you’re a little bit stuck if, for any reason, they can’t tolerate the steroids, and aren’t getting on with them. You are a little bit stuck with what else to suggest. Yes, it’s not exactly a nice option.’ (GP24, 12 years, F, S) |
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Implications of treatment | Adverse effects of treatment | ‘There’s just the sense of people that were quite well old people turning in to people who suddenly have a lot of problems and they’re on more medication and they’re just not as well at the end as they were at the beginning.’ (GP17, 11 years, F, P) |
Prevention of adverse effects and drug prophylaxis Impact of treatment on existing comorbidity | ‘So, then I say “And here’s another tablet for you. I’m sorry.” “And, actually, here’s a PPI [proton pump inhibitor] as well.’” (GP 24, 12 years, F, S) |
‘Oh, definitely, yes, their diabetes control, definitely. I mean, they’ve usually got type 2 diabetes […] so they don’t run into any crises, but definitely, their diabetes control gets worse.’ (GP 24, 12 years, F, S) |
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Practical implications of treatment and monitoring for PMR | Long-term monitoring of PMR | ‘Yes, again, sometimes people do get lost to follow-up, with all the will in the world, don’t they? So I had one lady who had been seeing me very regularly. We were bringing it [steroids] down. Something else cropped up with her, and she ended up, sort of, seeing somebody else for a while about another thing. And then she just had been left on this dose of prednisolone.’ (GP24, 12 years, F, S) |
‘Keeping follow-up and reduction in steroids, not enough appointments to bring patients back routinely, patients need to be aware of the treatment plan and be proactive if arranging tests and for symptom review.’ (Participant 3529, 5 years, F, S) |
‘Long-term steroid complications require careful and frequent follow-up, national and local guidelines and even within practice is muddled and lacks agreement, difficult access to secondary care, concerns they mix up diagnosis and timelines.’ (Participant 3927, 18 years, F, P) |
Treatment dose tapering | ‘I mean, I like my PMR patients because they are fairly straightforward. There’s a kind of loose structure of reducing this drug, seeing how they respond. I will kind of go clinically; I don’t push them to have blood tests every month. I mean, it just seems pointless. I judge their response by symptoms, not inflammatory markers.’ (GP18, 22 years, M, S) |
‘Main challenge is coming off steroids; most patients are completely delighted when their symptoms resolve after a week on steroids but become despondent and anxious when they start to experience steroid side effects (e.g. weight gain) and discover when they try to step down off their steroids their symptoms re-occur.’ (Participant 1665, 11 years, F, P) |
‘Frequent input with steroid regimens/doses especially when they struggled with dose reduction, no matter how slowly it was done — some patients feel dependent on steroids and will end up taking more (without consulting you) to control symptoms even when perhaps their symptoms might not be due to PMR.’ (Participant 818, 4 years, M, P) |