Dear JoanJo / all following this thread
First, sincere thanks for your post - and comparing notes. It's what this forum is all about!
I'm sorry if this reply is rather long, but I hope it helps. I've repeated it (here) as a New Post to all here if you think it's relevant. You tell me..?! 
Well, first: I think the moral of the story / verdict for many of Us Lot is that, yes, PMR (if not GCA) CAN burn out (or at least threaten to..) as we get to lower doses of the Preds and / or The Adrenal 'Guyz' (gender neutral) start to get their act together again after a long lay-off. The difference is Night and Day symptoms-wise.. Yay..! 
That said, and as I'm still learning after 2-ish years of PMR - and despite a recent, miraculous 'break' in symptoms (!), we're still not out of the woods even when feeling better / more like our normal selves.
After my account of 'Upping the Preds to 7.5mgpd and feeling worse / then thinking S*d it, I'll try dropping to 5mgpd out of sheer defiance / then getting a sudden, paradoxical (?) break from all symptoms etc' episode, it's back to business as usual with some of the familiar pain, stiffness and occasional DF (Deathly Fatigue) whilst holding steady - now at 4mgpd and with gritted teeth. Hey Ho, this is PMR after all! ;-/
That said:
Both my Rheumy and my GP, independently of one another, seem hell-bent on me reducing the Preds by 1mgpd every 4 weeks to Club Zero: which, of course, defies of all of the best wisdom here (i.e. 'maximum recommended reduction of 10% of the previous periodic daily dose at any time, etc). A familiar story for others here..?! 
As the (now) famous DJT***P would say: 'What the H*ll's going on here?!'
And, interestingly (the plot thickens?):
My (ok, respected but obviously very busy) Rheumy expressed surprise that I wasn't off-of the preds when he signed me-off about 6 months ago - barely 2 years from first dx. He went on to say, in writing, that (q.) 'for the vast majority of patients, PMR goes into remission in 2-3 years' and that I shouldn't stay at 5mgpd any longer, whatever. Mmm.... really... and why, exactly?
My (new) GP was recently also quite emphatic that (sic.): 'She gets ALL of her patients off-of the Preds within 2 years'. Wow! Again, Mmmm.. I chose not to get into an argument with her about my very different understanding of these things. I'll keep my powder dry for now..
Neither my Rheumy nor my GP seemed interested in discussing or explaining the possible causes of the notorious DF (Deathly Fatigue - mentally and physically) that often goes with both PMR and / or steroid tapering - and the reasons for it - nor the concept of DSNS (or its equivalents) especially when tapering at those critically important doses (i.e. < approx. 7.5mgpd) of the Preds where 'slower = safer / better'. Mmm.. x 3 now..
Reading between the lines (?):
I can't help wondering if (at least) some medics are maybe NOT so ignorant / un-informed about PMR and steroid tapering etc. as is often suggested here. But some are maybe more aware of the consequences of 'spilling the beans' (i.e. detailed and full disclosure) about what they really know about the process from their medical training, and choose not to confuse or scare their patients un-necessarily - and / or, maybe to cover their backs in terms of normal medical protocols. The thorny topic of whether to To / Not to advocate the controversial bisphosphonates (Alendronic Acid) for possible osteoporosis comes to mind as an example...
Surely, any qualified Medic will know Chapter and Verse about the often silent, co-lateral damage caused by the ubiquitous Preds whilst prescribing them to manage the worst of PMR symptoms for their patients, in most contexts? (I appreciate that GCA is a different matter clinically, for obvious reasons).
So, maybe their strategy with some /many patients is: 'encourage the typical PMR patient to get off-of the Preds asap at the same time as recommending precautionary / compensatory drugs (e.g AA) - and kick-the-can-down-the-road in terms of any consequences later'? Maybe a professional back-covering exercise? - you tell me...!
From what I've learned as an amateur on this Journey, PMR management via corticosteroids (or their equivalents) is a very complex multi-dimensional Physiological and Psychological trade-off, as many of us already know from bitter, personal experience. A case of Snakes and Ladders, or what?! :-? For many of us, we perhaps just want to get / feel 'better' without necessarily understanding the complexities of how or why..
But, maybe, with PMR at least, there is an equivalent paradox for some Health Professionals too: i.e. 'managing contingencies' around how much (or little?) to reveal to their patients about the potentially nasty physical and psychological side-effects of the cheap-to-adminster, generally effective and easily available Preds - at the same time as allocating their time and clinical expertise to more 'serious' (e.g. Life threatening) health conditions - and with limited resources all round (in the UK, at least)?
My conclusion, for better or worse?:
I'm certainly not excusing or advocating bad manners, ignorance and poor Patient Care by ANY health professional. But I do wonder if many Medics nowadays are so stretched in terms of their time and 'Performance Managed' resources that many struggle to prioritise which of their patients get the most urgent, focused attention and referrals to specialists - and which, too, places them in a difficult position all-round.
As PMR sufferers, I'm certain that we're not at the bottom of the pile on the daily Priority List of many medics. At the same time, we're probably not at the top, either. Food for thought - and all the more reason to keep close to this forum as a reality-check and source of trusted advice and research?
As always, I bow to the greater wisdom and experience of the various experts and Aunties here - I'm sure this one will run and run...!
In the meantime: try to stay positive, keep smiling, and remember that 'This, too, will Pass' - even if we don't quite understand why, when, or how
That's it. Brain over-heated after such long and intellectual ramblings. Wine open (dry red - as usual). Dinner in Wardrobe - again! That 'Witty' (allegedly) book making progress for publication pre-Christmas, if I have the energy.
Ohh, another day with PolyMyGodlyRoomInTheAtticUghh! ;-D
MB
