PMR flare, how much pain?

[Gilmor]

First, happy new year to the community

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

[DorsetLady PMRGCAuk volunteer]

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.

[Gilmor in reply to DorsetLady]

Thank you, will likely give it another week

[PMRpro Ambassador]

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!!

[Gilmor in reply to PMRpro]

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

[PMRpro Ambassador in reply to Gilmor]

Yes - I was thinking about your chilly spell!!!!

[Gilmor in reply to PMRpro]

Awful, I miss our apartment in Spain right now ; )

[PMRpro Ambassador in reply to Gilmor]

I bet! Supposed to be -10 here the next few morning - but it will warm up during the day to just above freezing AND there will be undiluted sun!!!!

[Lyndaki in reply to Gilmor]

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!

[Sharitone in reply to PMRpro]

May I ask why being on Actemra makes it less likely to be a flare?

[PMRpro Ambassador in reply to Sharitone]

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.

[Sharitone in reply to PMRpro]

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?

[PMRpro Ambassador in reply to Sharitone]

Honestly don't know. It also depends WHY you stick at 3 or 4. Is it because the symptoms return or is it adrenal function related?

[Sharitone in reply to PMRpro]

Symptoms🙁 PMR, that is. goodness knows what the rest of it is doing.

[Satya70 in reply to PMRpro]

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.

[PMRpro Ambassador in reply to Satya70]

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?

[Satya70 in reply to PMRpro]

I dropped 1/2 mg each time and tried to stay there for a month. At 7.5 I gave up after 10 days.

[PMRpro Ambassador in reply to Satya70]

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.

[Satya70 in reply to PMRpro]

I’ve been contemplating that possibility. My next rheumatologist appoint is less than a month away. I’ll ask him.