I've found PMRpro's article on the background of DSNS tapering illuminating. The literature suggests that it is the cumulative amount of steroids that matter as much as the daily amount. So, looking at DSNS levels of pred in terms of MWT (moving weekly totals) or MMT (moving monthly totals) the smoothing effect is clear. It's not just that DSNS stops a cliff-edge, it's that it ensures a continuing smooth decline.
So, it's as though you're effectively shaving very small amounts off each day.
Sorry about the statistical stuff 😕
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Stravaman
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Trouble is - too many doctors think that the month you are behind is contributing to that cumulative dose! It just need one flare to wipe out all that perceived benefit.
Mind you - I'm less convinced about the cumulative dose. My cumulative dose must be WAAAAY over 20g by now. No side effects that are identifiable. But I have only relatively briefly been up to 20mg when on methylpred which didn't have much antiinflammatory effect for me but led to wonderful side effects! I think a long time at a moderate to low dose (i.e. under 15mg) for PMR isn't associated with anything like the risks of GCA-level doses.
Yep, no doubt DSNS and its equivalents are the currently the best methods to ensure a more continuous (e.g. as you say, weekly) graduated taper as opposed to the periodic (e.g. monthly) step-downs often advised by medics.
That said, even the smoothest tapering 'plan', mathematically, is only that - a plan. It can't anticipate or allow for the Heterogeneity of PMR disease / inflammation activity +/-, and various other factors that can impact on or aggravate it, e.g. (any or all of): co-morbidities, infections, viruses, physical trauma / injury, Stress, and as some here report, even changing weather conditions. I'm not aware of any science that can track any or all of those variables - now that WOULD be a breakthrough!
In my opinion (and from experience), that's why even the well-respected DSNS needs to be implemented in the above context. I.e. to be ready to plateau (pause the continuation of taper at any level for a period) or even 'nudge' back upwards if necessary, and depending on symptoms. I've seen the phrase 'Symptoms Rule' here more times than I can remember. And (if I'm correct) there is a reference to this effect in the latest BSR guidelines on managing PMR with Preds. (N.b. GCA is a very different animal in terms of the potential risks to eyesight if not treated promptly and properly).
I inadvertently devised my own version of DSNS using the same mathematical principles 3 years ago - by number crunching rather than on a spreadsheet and before I learned about DSNS. Despite that, and like many others here, I still had a Snakes & Ladders tapering journey (symptoms-wise) and concluded that the likes of DSNS, although being known to minimise the risks of flares and / or the effects of them, still bring no guarantees. As many report here, PMR can be a very un-predictable illness to manage.
My Conclusion, for what it's worth?
To use a sailing analogy: with PMR and the Preds, we have to set a steroid tapering course (plan) using our best judgement, and hopefully with an understanding and supportive GP: but to be prepared to 'tack' (make small and regular adjustments to the direction and course) according to the prevailing conditions. That way, we stand the best chance of arriving at the destination Pred Club Zero... even if the Journey is a long and frustrating one.
"even the well-respected DSNS needs to be implemented in the above context. I.e. to be ready to plateau (pause the continuation of taper at any level for a period) or even 'nudge' back upwards if necessary"
Something I have emphasised from the outset - nothing is written in stone. And that was one of my reservations about the app - when you work with old-fashioned pencil and paper you don't see a hypothetical finish date that you all too often fail to achieve.
It seems that in order to be consise I omitted context. 1) I sought simply to explain a mechanism by which tapering could be partially explained 2) This approach to understanding only applies to a straightforward period of reduction without extraneous or hostile factors. 3) Yes, symptoms not numbers rule. I was not advocating a new, mathematical, model. Just helping tounderstand the dark art of tapering. 😎
If memory serves me right - a dangerous thing to say on here - the original DSNS taper was devised to stop patients suffering from steroid withdrawal - which oftens happens, understandably, when you reduce from old to new dose within a period of 24hrs.
But it’s not rocket science to realise that a slower taper, shaving a bit off every day as you say, would make that process easier.
Whether it’s PMR or GCA a much larger dose than is required on a daily basis is given at the beginning to get the accumulated inflammation under control. That worries doctors and patients alike.
Obviously nobody, patients nor doctors wants to stay on a too high dose, so the emphasis is to reduce to the actual level that is required to control your symptoms. And that is where the problems start - too many doctors (and patients) are over optimistic about how quickly that level can be achieved. Plus as Mark says it is on a plan, and life has a nasty habit of throwing that plan out of kilter!
Like PMRpro my cumulative total is around 20g, but achieved in a much shorter timescale - 4&half years and starting at a much higher dose - GCA as apposed to PMR. With a starting dose of 80mg, 18months was spent taking more than 15mg a day, the next 3 years below that figure. As for long term affects - mine was really only a Pred induced cataract! And maybe an escalation of Osteoarthritis - although that’s difficult to quantify!
I devised my own taper once I got into single figures, as I found reducing at low doses more troublesome than at the high doses GCA requires.
From what I’ve gleaned on here, I think that reducing with PMR is much more troublesome than dealing with GCA alone.
My idea was to minimise the withdrawal effect to make a return of symptoms more obviously a flare. Identifying the "right" dose was also part of it. But the smoothing effect was a very big part of it...
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