My first post but avid reader of this site. Diagnosed PMR Sept 2015 and have tapered Pred steadily down to 2 mg.
From 10 mg down I've used the DS method and from 6 mg I additionally split tablets to reduce in .5 mg increments. My GP has given me a free hand and for that I'm grateful. I do not have Rheumy supervision. In our neck of the woods PMR is in GP care unless complicated.
Apart from the 'deadly' fatigue that most of us experience, it has been a 'text book' taper, if such a thing exists, down to about 3 mg, when I developed soreness/pain in the joints of my right side - shoulder, hip, knee. More the ligament tissue supporting the joints than the articular bits themselves, I would say. It feels like they tighten. Normal bloods.
Tried an experimental couple of days, elevating the pred again, to the last comfortable level, which as I expected (on account of it being one sided) didn't do anything except depress me, because of the retrograde step, so I reverted to 3 mg. and persevered with tapering. Since then I have reduced by two half mg increments to 2 mg but the joint pain is still there and, I would say, it's getting worse.
My GP has fixed me up with a physio appointment but no diagnosis proffered. It seems as if the physio is expected to come up with the diagnosis which seems a bit unfair. The physio triage technician has already said she hasn't a clue what it could be.
Presently I do Tae Chi once a week and a bit of gentle practice alternate days and do a 2 or 3 mile walk alternate days.
( I'm Type 1 diabetic and the lower pred doses are enabling me to get my insulin levels nearer my pre PMR doses and my weight to move in the right direction)
This " condition " is becoming increasingly debilitating and I feel it is holding back my recovery.
Not even sure this is PMR related. Any one with similar? Any theories please?