I tapered all the way down from 15mg to 1mg of Pred and came off completely in November last year. I've been feeling great for 6 mths and my rheumatology consultant signed me off just last week. This week I've developed uncommon and relentless pain in my neck and shoulders.Could this be a flare-up?
Trish
It could - in our experience 6 months is a very common time for the inflammation of very low disease activity to build up to a level where you can feel it. Even 1/2mg can be plenty to keep those tiny amounts of inflammation under control but zero pred is a step too far.
Thank you
Ditto. Off Pred 6 months after 4 and a half years of PMR. Had creeping pain getting worse around 6 weeks ago but stuck it out as had a Rhemy Appointment . Also paracetamol had no effect at all. It was my neck, shoulders and arms, hands too. My markers were raised CRP 15 which is high for me. It was a Registrar, he said no to PMR it’s your OA!
I didn’t believe him so saw my GP 2 days later. He dx. PMR and am now back on starting dose 10mg. It’s been 1 week tomorrow and like last time a miracle with hours like PMRpro. started on Pred. I am Pain free almost. So a review tomorrow, I’m not sure what he will suggest for a taper but I will do what I feel is right.
Good Luck.
If it were me I'd drop to 5mg. I think you will need well under 5mg - you are back where you were before stopping pred and at the time you were OK on 1mg.
Thanks for that - interesting to hear; your situation almost mirrors mine. I'm going to get bloods done tomorrow - the painkillers did help but only to mask the pain which has now come back. TBH I'd be reluctant to go back to 10mg and start the whole tapering process again, so might see how it goes with maybe 1mg per day to begin with, but if pain persists I'll be seeking the miracle relief too!
Hope everything progresses well for you. Trish
If this is a flare after getting to zero pred we would usually say try the flare protocol in that you flared at zero, add 5mg to start for up to 2 weeks max (7-10 days is usually enough) and drop to where you were last good - if you had no problems prior to stopping and you had been at 1mg for a month or so at least 1mg should be enough. But you have to springclean before going back to dusting - get the accumulated inflammation that is causing the symptoms out first.
It might be - 6 months is about par for the inflammation to have built up again.
Couple of things to try - ordinary painkillers to see if they make any difference.. if so then could be any random thing, if they don’t, then more likely PMR.
So then, if you have any Pred left you could perhaps try a couple of mgs and see if that makes a significant difference… many find that even 1/2mg at the end of a taper is sufficient - and a better option than just dropping from 1mg to zero.
That's great; I'll try paracetamol tonight/tomorrow and if they don't work I'll go back to a small dose of Pred as you both advise. Thanks
Plenty of good advice already but I’d add what my rheumatologist recommended: try and see what happens over two weeks and look for other signs of PMR and/or how the pain reacts to non-steroid painkillers…
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