Apparently I'm quite young for a diagnosis of pmr the GP said, he asked me about my journey-i explained about the covid, long covid, ME, before settling on a diagnosis of pmr, I said steroids are magic!! And begged him not to say right off you come now. He said my esr is 6!!! Which is much better than the 40 it was in July/August! Also my crp is less than 1! Amazing right? So why do my knees, wrists, arms, hip and back feel like I've run a marathon? Doctor has said to taper down 1mg every 3 weeks starting tomorrow.
Also has prescribed me alandronic acid as he is concerned about osteoporosis.
I'd appreciate your thoughts on this oh wise group of pmr warriors x
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Claremarie83
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You are quite young - but Prof Mackie in Leeds, UK PMR expert, says she has several patients in their 40s. The youngest patient in the literature was 24 and a 37 year old had proven GCA which caused his death so it DOES happen. Just not often.
Just because the inflammatory markers are low doesn't mean the disease isn't still in full swing - just the pred is stopping the inflammation developing. The autoimmune part is still active, attacking your muscles making you feel as if you have flu. In fact - I never had raised markers, I still felt as if I'd been hit by a bus, It isn't unusual. And you still have to recover from all that inflammation.
Have to ask - have you gone back to normal activity levels because you think you are so much better? That is not advisable - you have a new normal now and your muscles will develop DOMS - delayed onset muscle soreness very very easily, a walk can be enough if you overdo it. So DON'T think - as many doctors so - that because you are on pred, everything is cured. It isn't.
Beware of the speedy taper - that is far more sensible than many doctors would say but even so, it takes at least 3 weeks to be sure you are still OK on the new dose, maybe stretch to every 4 weeks if you can. And be vigilant.
Thankyou, I'm pacing as much as I can, but admit I still have periods where I think oh I'm ok and keep going 🤦♀️. This weekend I painted a wall. One wall. it's done me in. I guess pacing more needs addressing. Thankyou so much for your reply about the inflammation markers too, that's interesting!
Ditto to all PMRpro has said.. and most definitely 4 weeks at each dose, and then no reducing if things aren’t right.
Bloods aren’t the be all and end all that some doctors seem to think… which is why our mantra is “symptoms are the key “… and also why it sounds as if your PMR isn't yet under control.
You have stuttered a lot, which may be due to you trying to do too much [I know you work which makes everything more difficult] - but you have to really take stock and get to grips with the pacing advice that PMRpro sent you in a previous posts… it’s not a choice, it a must….
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Cortisone injection for PMR
Update re Sensible GP, Rheumatologist not so much…
Doctor is stumped (American for confused)
Pmr/gca or myosthinia gravis? 
