"Flare" question

[slopers]

I’m a relatively new member and have been reading the posts daily while I have been slowly tapering from 7mg to 6 currently for PMR. In my past attempts at tapering, that I now understand were done too quickly, my symptoms of neck stiffness and painful collar bones presented over the span of a month or two at about 4.5-5mg. Each time, after realizing that the pain was getting worse, I went back to my “comfort” level of 7-7.5mg and felt better. (Dr. recommended as well)

Would this slow, progressing pain and discomfort over weeks and months be considered a “flare”? I’ve read many discussions of people experiencing a flare up and was curious to hear others experiences of how quickly a flare comes on. Do some flares occur overnight? Days?

I‘ve noticed some stiffness in my hips in the last few days (after admittedly overdoing it lately!) and am wondering if this might be the start of another flare? Is getting some discomfort normal as you taper? Obviously, I would rather not increase my dosage if this feeling is just part of the process. Thanks!

[DorsetLady PMRGCAuk volunteer]

This explains the difference between a flare and steroid withdrawal -healthunlocked.com/pmrgcauk...

But reading your actions, would say that your return to 7-7.5mg was either long enough or high enough - or both -to get things properly under control...so when you dropped backed down it, your inflammation just built up again.

You need to give your body time at one dose, before you drop the dose again...or you end up in a yo-yo situation.

[PMRpro Ambassador]

Have you seen my dripping tap into a bucket analogy?

The inflammation created each morning by the new batch of inflammatory substances shed in the body about 4-4.30am is the dripping tap. You are the bucket. As long as you scoop out all of or more than the water let in by the tap, the bucket doesn't overflow. But if the scoop is replaced with a smaller volume one, eventually the bucket will slowly fill up and eventually overflow.

The amount of pred you need is what keeps the water level constant or going down. How quickly that will happen depends on the starting level and the amount of inflammation - so early days it pays to really clear out the accumulated inflammation properly before reducing in small amounts and giving yourself a chance to be sure the new dose is still enough, When you start to get niggles - the stiff neck sounds to be "your" signal you are getting close - that is your body poking and saying you need toslow down, even stop FOR NOW. It doesn't mean you won't get lower, just not yet.

You are not reducing relentlessly to zero - you are looking for the lowest dose that gives the same result as the starting dose did. If it is at the same dose that it happens more than twice - you have reached your destination. Take a break for 2 or 3 months and then carefully try another small step down. If it doesn't work - give it a bit longer. Eventually it will work but do all you can to avoid a proper flare up of symptoms because then you tend to go back further than you need - often if you catch it quickly and go back to the last good dose you won't need to go higher. But you also need to take note of what you had been doing - often the discomfort is having overdone it and that sort of pain, as well as pain from reducing in too big a step, will respond to paracetamol. PMR pain rarely does.

There are two reasons for a flare - it may be overshooting the dose you need and if the step down is small it can take a while to feel it as the inflammation builds up. And then suddenly you notice it. Or it may be an increase in the underlying autoimmune disease activity for some reason and then it can be sudden.

And when you drop down again - don't go to the dose at which you had problems - go above first.

[slopers in reply to PMRpro]

Thanks to you both for your responses. Good advice and explanations. I'm in no rush and will keep you and the group posted on my experience.