Suspected flare and following my instincts

[bright-horizon]

I've been on prednisone and methotrexate for GCA and PMR since January 2019. Mostly the tapering has gone smoothly apart from early this year when I had a lot of pain - wrongly assumed to be pred withdrawal problems, so boxed on. After about 6 weeks of increasing pain, fatigue etc I finally saw the doc who decided it was probably a flare. He put me back up to 20mg from 3mg, such a disappointment but ultimately effective. My CrP had remained consistently at about 3 so was no help with the diagnosis.

From here I have tapered according to the doc's recommendation, down to 15mg after two weeks, then 1mg per month, all at once instead of the careful DSNS regime I had been following. All has gone well, with very minor pain, not much tiredness and fairly clear head. Until about 5 days ago when I had been on 9mg for about three weeks and suddenly began to have severe joint and muscle pain all over, all day and night, increased fatigue and brain fuzziness.

So today I have upped the dose to 11mg with the plan to stay here until symptoms settle (fingers crossed) and then down to 10mg for a week or two, and then back to 9mg.

I've done this without advice from my doc. Because he said that if symptoms worsen I should get the bloods done and increase the dose IF the CrP is elevated. Well, it isn't. Like last time it has remained consistently at 3 and yesterday was at <3.

Since doc has indicated he's happy for me to figure it out for myself I decided to proceed with this strategy - just couldn't bear another night of pain and terrible sleep while I wait for his reply. I will tell him after the fact.

Anyway, thanks to all the wisdom gained on this forum it seemed to me a sensible way to go. Any comments are most welcome.

[PMRpro Ambassador]

Am I being dim - I can't see at what dose the symptoms appeared last time? Has your increase now sorted things?

[bright-horizon in reply to PMRpro]

You’re not being dim, I was being vague. Last time I was at about 6mg when things went bad, but because I wrongly decided it was withdrawal I put up with the pain until at 3mg. Anyway, tonight, 14 hours since taking 11mg I feel surprisingly better. About to see if it will be a pain free night.

[RoadTrip]

I also have GCA/PMR. If I flare I follow the excellent advice in FAQ, plus 5mg for a number of days then back down to last good dose for a few weeks before tapering again. This seems to work well for me. Best wishes.

[bright-horizon in reply to RoadTrip]

Thank you! I had forgotten about that advice and maybe that would work better than just going up by 2mg. The day and night went well, with much reduced pain and good sleep. But this morning my hips and knees and hands are screaming. I’ll give the 5mg ‘rescue dose’ a try.

[RoadTrip in reply to bright-horizon]

Hope it works for you. I usually stay at the +5 mg dose for about a week and then +2.5mg or +2mg for a couple of days ( never brave enough to jump straight down again) before going back to the +1/2mg of the flare dose to start tapering after a few weeks.

[Hidden in reply to bright-horizon]

Do any of us think that a lot of our pain could potentially be as we age Osteoarthritis and not always PMR....hard to diferentiate I know. My hands are so painful and sure it's OA. Knees when going up and down the stairs and standing up from a chair are painful too.

[piglette]

You probably did not need to go up to quite such a high dose as 20mg but at least it seems to have hit the PMR over the head which was the main aim. As you probably have read on this forum the inflammation markers like CRP are less important than how do you feel!

[bright-horizon in reply to piglette]

Yes, thanks! And fortunately my doc has grudgingly admitted that the markers were normal throughout the last very bad flare. Yesterday was good but this morning back into the joint pain. So I’ll try the plus 5mg for a few days. When I’m in the middle of it all it’s difficult to remember how it feels to be relatively pain free!

[piglette in reply to bright-horizon]

It is great to be pain free though.

[bright-horizon in reply to piglette]

YES!

[DorsetLady PMRGCAuk volunteer]

This link contains usual advice for dealing with a flare -

healthunlocked.com/pmrgcauk...

[bright-horizon]

Thank you! I think I have it saved, but nice to have it without the search.