Flare protocol

[liverbird12]

Someone mentioned a 'flare protocol' and I'd like to know what it is please. I am currently experiencing a recurrence of my symptoms and think it is a flare. I haven't seen a rheumatologist since being diagnosed in 2017 and managed my own tapering, getting down to 1mg on alternate days. The GP put me on 10mg for a week, 5mg for a week but since trying 4mg, the symptoms are back. She has referred me to a rheumy but I've no idea how long the waitlist is.

[DorsetLady PMRGCAuk volunteer]

This link contains what we suggest -

healthunlocked.com/pmrgcauk...

Not too sure what you are going to use as your base though if 4mg is troublesome when you’ve previously been down to 1mg.

[PMRpro Ambassador]

That must be so disappointing for you. However - do tell us a bit about your journey from 4mg before to the 1mg alternating days, how long you spent at each dose on the way down for example.

The flare protocol is where you add 5mg to the dose at which you flared for up to 2 weeks and then return to the dose ABOVE the dose where you flared, where you were last good. Which is pretty much the same as your GP told you to do so it sounds as if it is a little bit more complicated than just that and why I'm asking about how you did that last few mgs.

It can take a while for inflammation to build up if you go to too low a dose and so if you reduce the dose quite quickly you may not realise what is happening until you have dropped another couple of mg. But you can also flare because the underlying disease process has increased in intensity and it may be difficult to decide which it is in your case. Sometimes patients get to zero and are off pred for a few years before PMR wakes up - and sometimes it happens before they get off pred because it had quietened down and possibly gone into remission but there wasn't time to get off pred altogether.