PMR FLARES

[icu2]

prednisone

want to understand what is meant by a “flare”. is it any PMR discomfort or something major?

[PMRpro Ambassador]

We call it a flare if you have a return of PMR symptoms. Doctors may call it a relapse - I don't agree with that definition as it implies the immune disorder has gone away in the meantime and usually it hasn't, the dose of pred you are on is just sufficient to control the inflammation.

It is most often because you have reduced the dose of pred too much and it is now not enough to contain the daily dose of inflammation created every morning. But it can also happen when you have been on a dose for some time and the underlying disease activity increases for some reason.

[icu2 in reply to PMRpro]

ok...so- other than my first months on prednisone ( 20 mg)when as i remember , i was virtually stiffness free every morning now i do have tolerable stiffness in my shoulders and arms until i get moving and take my morning dose ( 5 mg a.m. as i take 3 mg before bed hoping to mitigate the morning stiffness...so 8 mg daily total).

i am questioning if this stiffness would be considered a flare or should i be seeking something more dramatic and painful

and thank you for responding. your info is most helpful

[PMRpro Ambassador in reply to icu2]

I don't think I'd call that a flare as such provided you are getting full relief by the time the pred works. It is a part of the natural pattern of the PMR and many people never get rid of that entirely. Mind you - since you DID get to be pain-free at the start it does suggest you are probably about at the dose you are looking for: the lowest dose that gives the same symptom relief as the starting dose did. Have you tried reversing the amounts, taking a bit more at night?

[DorsetLady PMRGCAuk volunteer]

See attached, might help you differentiate- are you having issues at the moment?

Steroid withdrawal v flare

Steroid withdrawal (or body getting used to new lower dose) usually shows immediately new dose is taken - and lasts between 2-5 days. It varies from a general feeling of being off colour to a return of symptoms pre diagnosis. For some it can be eased by paracetamol.

A flare happens when you’ve gone below the level of Pred your illness requires, (too low a dose) and take anything from a couple of days up to 2 weeks to materialise- and (usually)the symptoms are similar to those pre diagnosis.

If you haven’t yet reduced it could be that you are too active for your medication to control the illness.

Paracetamol (or equivalent) will not help. The only thing that does is an increase in dose. Sometimes a return to previous dose is enough, but if it’s got too bad then it’s recommended to add 5mg to the dose you last felt alright - stay there for 5-10 days and then drop back down to just above the dose you flared. Stay there for 2-4 weeks to make sure all okay before you try and taper again.

[icu2 in reply to DorsetLady]

that helps. thank u

[HeronNS]

Having had recent experience of both pred withdrawal and a major flare.... When it's pred withdrawal it's discomfort which goes away after a few days if you stick with the dose you are on. You would not want to try tapering again until you know that discomfort has really disappeared. A flare is when you realize part way through your day that you are feeling an awful lot like you used to before you started taking pred. Whatever dose you've taken doesn't seem to provide the relief you are used to. In my case this crept up slowly and insidiously, and I dismissed it, as years ago I'd dismissed early symptoms of PMR, as being "merely" osteoarthritis. This is in spite of my blood markers becoming higher than ever before (how dumb could I have been you may well ask). I had to take 10 mg for a while. Then I tried dropping by 1 mg every few days, then .5 mg. I'm now at 7.5 and feel the need to stop here for a few days longer to determine whether morning pain is the flare re-emerging or only pred withdrawal. I feel very well in the evening, so the next few days will tell me more. Thought I'd developed infinite patience, but to be honest this is very tiresome!

[Meggsy]

I recently went from 5 to 10mg after dragging myself around with leaden legs and painful hands and wrists. Wonderful relief, wished I could stay there forever. Presently on 7.5mg for four days and will try 6 tomorrow. It all started when trying to slow taper from 3 to 2.5mg. I had been on 3 for 10 weeks and had been tapering by 0.5mg since originally on10. Have you tried taking your full dose at 3am? It works for me but doesn’t suit everyone. All the best.

[icu2 in reply to Meggsy]

thanks Meggsy...taking in all the info and thinking it through from each of you. on full dose ( 20 mg) and until a week or so ago i was awakening at 3-4-5. and not able to get back to sleep. i do split my pred...but before bedtime....which could be 8-9... as i am up so early. that said while i wake up to pee nightly 1-2:00. i am falling back asleep which is such a relief as the other way my days were soooooo long with nothing to do, no one to see and no place to go ( covid). will postpone this spit dosage until pee break...and see what happens. thanks

[Meggsy in reply to icu2]

👍 🤞

[KinnearD]

Diagnosed August 2018, I'm currently on 4.5mg prednisone that I take anytime after 2am depending on that "pee break." Somehow I usually wake at 3:30 am. I'm fortunately able to have a slow morning start...coffee in bed, read, emails etc and function well from 9:30 onwards.