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.
advise on reduction following flare.
Update on my scan for GCA flare
Experiencing my first flare, moving backwards…
Newbie with suspected GCA
⁹Suspect 1mg was too low, next step?
