Flare?

[SanRaphaela]

I was diagnosed with PMR in December 2018. I was started on 16mgs and have slowly tapered to 4mgs. 4 is as low as I can currently go, as an attempt to drop lower resulted in pain within 3 days. I had been pain free at 4mgs for 8 weeks. Last week, out of the blue, I started waking up with the familiar bilateral knee, hip and a little shoulder/neck pain. It improves with movement and (interestingly) acetaminophen. I presume this is a flare -- but one not caused by tapering? I'm wondering if I should just manage through at 4mg with the Tylenol and see if it subsides or go up a bit? I just wasn't sure what to go up to and how long to stay there. Thanks in advance for suggestions.

[SheffieldJane]

What about going up by 5 mgs for a week and then straight back to 4 mgs. ?This is a method that sometimes heads off a flare that may have been caused by overdoing it a bit.

[SanRaphaela in reply to SheffieldJane]

That was what I was wondering -- could I bump up just for a bit to knock things back but not stay there long enough to have to slow taper?

[PMRpro Ambassador in reply to SanRaphaela]

Do remember that you need enough pred to manage the symptoms. If you go too low, you will flare up again.

[PMRpro Ambassador]

Unusual for acetaminophen to deal with flare pain - it often helps withdrawal pain but you should be way past that after 8 weeks. I wonder if it is aches due to lagging adrenal function? If you are only slightly low on cortisol it could take a while to catch up - or have you been doing more in the last week - it being Thanksgiving and all?

Remember though that you can flare without going to a lower dose.

[SanRaphaela in reply to PMRpro]

I have definitely been doing more this last week. And the doctor confirmed from my previous taper symptoms that my adrenals are a bit slow to respond. I also thought the responsiveness to tylenol was odd. But it does knock the pain back and seemed like a good compromise to increasing my prednisone if this flare is going to be short lived.

[PMRpro Ambassador in reply to SanRaphaela]

Try cutting your activity back for the moment - won't be for ever but it makes a big difference.

[DianeA1]

My timeline is similar to yours, (pains in Nov 2018, dxd in Jan 2018). I am toggling 2 - 1.75 using DL's taper. Last week, I felt that old familiar shoulder pain when lifting my arms and rolling in bed, so I have added 1 mg and Tylenol to see if that helps, just like SheffieldJane posted. Fingers crossed! All the best

[Blearyeyed]

If it improves with other painkillers it may not be a PMR Flare but other knee muscle or nerve pain which may have been around before but was masked by higher steroid doses or may have been triggered by the increase in your activity.

You knee just may have started to do more than it could cope with , especially if it's weakened or there is another knee issue.

It may well be worth remaining on your current dose and the pain killer you are taking and going to the GP to have it checked and stayed first , just in case it is not linked to steroids or PMR.

And keep track of any movement or activity that makes it worse as this may be something you could adapt quite easily to reduce the Pain.

[SanRaphaela]

Thank you for all the replies!