Tapering advice

[Rebsy]

I have been tapering down from 10mg Pred ( reducing 1mg each month) I’m now at 6mg. Went to see consultant who seemed content for me to continue this despite fact I’m quite achey - the fact I could raise my arms and get out of my chair unaided was all she needed to see! I’m not in pain as such, so should I just keep going? Saw my GP who had called me in re blood tests. My CRP is 32, higher than my previous tests and my ESR is 10, lower than my last test. He said I should be pain free, I think that’s unlikely, I haven’t been pain free since I was on 15mg. Suggested I up my dose for a month and then taper again. I suppose I’d just like a bit of advice as to whether I keep going, or up my dose and by how much? I appreciate the wise words I find on this forum - it really is a massive help.

[SheffieldJane]

Your achey symptoms could be coming from the beginning of your Adrenal function beginning to kick in. I would certainly see it as a signal to taper by half a mg at longer intervals to give your own cortisol a chance to get working. I haven’t been pain free either, what is that even like? If your consultant is content to leave this in your hands, I would carry on with a very gentle taper.

[PipandDots in reply to SheffieldJane]

is it the case that achy shoulders is a sign of adrenals beginning to function?

[SheffieldJane in reply to PipandDots]

It could be. Even our doctors make educated guesses.

[PMRpro Ambassador in reply to PipandDots]

Aches can be - but I'd be inclined to fear PMR raising its head again because you are at slightly too low a dose. It is a difficult balance making the decision at this stage. The answer to get rid of both is going back to the previous dose but if it is an adrenal problem that just postpones the crunch because adrenal function will only return when the pred dose is lower.

[PMRpro Ambassador]

Don't agree you should be pain-free - some people never are. You should never be worse at the end of a taper than at the start - although at lower doses other things may reemerge, like OA and signs of old age (less so at your age!)

If it were me, I'd stick at 6mg for a month or two and see if things improve. If they get worse it is a sign that the PMR isn't being managed by the dose you have got to. That CRP needs checking again - see if there is a rising trend. Did you have anything else going on when the blood was taken? A chesty cold for example?

[Rebsy in reply to PMRpro]

Thanks for your advice. The consultant also asked if I’d had an illness or felt unwell ( also had raised white cell count which is now fine after second blood test) I was absolutely fine.

[PMRpro Ambassador in reply to Rebsy]

Probably a bit of a viral infection that your body dealt with very firmly!

[DorsetLady PMRGCAuk volunteer]

Problem is at your dose, it could be loo low a dose for your illness [which may be substantiated by higher CRP readings unless there is something else causing that] or adrenals struggling, or more likely a combination of both.

Couple of links - first gives advice on dealing with a flare [although it may not be a full-blown one] and one on adrenals.

As it doesn't appear to be a full-blown flare your GP's advice may work, but would suggest a 2mg increase might be more successful - as you say you have never been pain-free, it's a bit difficult to gauge what a "good" dose for you is, which is what the advice in link relates to...

healthunlocked.com/pmrgcauk...

healthunlocked.com/pmrgcauk...

But as suggested by PMRpro you may need another blood test to see if there is any change..