I’ve successfully tapered down from 15mg last June to 3mg now. I’ve been very lucky and had minimal problems getting down to 3mg. I had a routine blood test this week and my plasma viscosity has risen to just above normal (1.73). It was 1.66 back in December when I was on 6mg. CRP is normal and has been since I developed PMR. I’m not sure whether to take that as the inflammation is increasing and the PMR is still very much active or whether being at such a low level of steroids my adrenal glands aren’t quite working as they should/catching up. It’s now making me very nervous about any further decrease in steroid dose. I’ve been very nervous all the way down!!! In myself I feel pretty good and have no significant symptoms (apart from steroid related issues, stomach acid reflux etc). Not sure if I should continue to taper even though I feel fine.
Plasma Viscosity + Tapering: I’ve successfully... - PMRGCAuk
Plasma Viscosity + Tapering
I would take the increase as a warning to be extra careful. I know WHY they have changed from ESR to PV but they don't have the experience or data to know what sort of change indicates what. You have certainly been able to taper well and quickly - the average time to get from 15 to 5mg is about 15 months - you are well ahead of that curve. I would take it you need to aim for that 1.66 as ideal value and so it rising means that MAYBE you are at the borderline. I'd stick where you are for a while and see if you develop any symptoms - they always trump lab values anyway. A single raised marker shouldn't result in a knee jerk increase in dose, but a wait and see policy with another blood test or two is best to establish if there is a rising trend. If there is - even MORE care and watchful waiting.
Thank you so much for your reply. I’ll take what you’ve said on board and stay at 3mg and ask for another blood test in a months time and go from there. I do feel I’ve done really well up to now so don’t want to rush it and have problems.