Have not posted in a while, but wondering what a PMR flare feels like, how much pain should you expect vs something else? Not an easy question of course but have to try and determine if I have a PMR flare or something else. Stiff neck, right shoulder and sometimes stiff after sitting. Stiff joints toes/feet but have had that for a number of years, maybe more intense now. Not really more in the morning but often better in the evening but instead feeling warm/hot but no temp. On a pain scale would rate it 2-4 of 10. Had a herniated disc a few years ago and that pain would be a 10 😉. Currently on 9mg pred, had tapered to 1mg, but probably began feeling symptoms at 3/4. Been on 9mg for a week but have not really experienced any improvement, some days are better. Also on Actemra so CRP and ESR pretty useless as indicators. I am managing and my symptoms are really minor compared to some of others in the community, but would value your input nonetheless
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Gilmor
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If you have increased from 1mg to 9mg and there is no discernible difference within a week, they I would query it’s all down to a flare. Perhaps give it another week [no longer or you'll need to do a slower taper] - and then drop back to 4mg whatever the outcome.
If the extra week does make a difference, then you have you have your answer- it was a flare. However if after 2 weeks at the increased dose hasn’t helped, the it probably something else. If that’s the case then you’ll need to thinks again and maybe try painkillers.
If you are on Actemra, I'm really not sure that what you are describing in a flare - that said, I have similar feelings that are very relateable to weather!!
Yes, weather might be a factor, been -10/-20 here since Xmas, usually get cills in the evening and then later a warm feeling like low grade fever. Gone in the morning, weird
I live in Spain & it’s been blooming freezing this week! I’m inland high up though & days are nice if it’s sunny. It’s definitely made a difference to my aches though! Roll on Spring!
Because if it is PMR Actemra will deal with the vast majority of the inflammation - there are other possible causes of inflammation that Actemra won't deal with but they are usually very minor so less likely to cause trouble. Less likely - not impossible.
So if someone (like me) who can't get lower than 3 or 4mg, then it is likely to be the macrophages, etc? Is this more likely with people who have LVV as well as the cranial type of GCA?
I was tapering down very slowly from 15 mg. Got to 7.5 and hit a snag. Went back to 10 on the advice of my rheumatologist. Tried to taper again. Hit a snag at 8.5 and then had a flare. Off and on pain at about 7 or 8 level. Fought it but after 2 weeks went up to 10.5 The thing is that it seems that once a flare starts it’s harder to get the pain back under control. At 10.5 I’m still experiencing pain at level 7 & 8…not every day but quite a few days a week.
That's very typical - once you get into a yoyo pattern with dose it gets harder each time to get things under control and reduce again, Did you drop from 10 to 7. 5 in one go the first time? And what do YOU call very slowly? The first time did you get everything under control and wait a bit before trying again?
It sounds like a bit more than just a flare from overshooting the dose you need - flares can also be due to the disease activity ramping up again. You might even need to go up and start over if that is the case.
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