How do you know when to start tapering?

[Pr0jection]

My rheumatologist says that there's no set protocol for tapering. He says that as my blood work has been good for the last 9 months, since diagnosis in August 2020, I could reduce from 7.5mg to 5mg, and he's leaving it up to me with instructions to increase the dose if I get a flare. However, I've read so many posts that say PMR lasts for at least 2 years, maybe longer, and yet there are some folk who manage the tapering far more quickly. I know everyone is different but some guidance from others, based upon their own experience, would be much appreciated. Thanks

[DorsetLady PMRGCAuk volunteer]

You rheumy is wrong there is a set protocol......does he not read his own associations guidelines? I know you are in Cyprus, but he must belong to an association. Not that it always works as suggested, but it’s a start, and can be amended to suit the individual.

Initial dose to get the built up inflammation under control (anywhere between 3-6 weeks) - once that’s done you decrease to find the lowest dose that keeps the daily shed of inflammation under control...preferably on a monthly basis.

For PMR - most guidelines quote - 15-12.5-10mg (not always achievable) - Then reduce 1mg every 4-8 weeks depending on individual.

As you are at 7.5mg would suggest you reduce either 1mg every 8 weeks, or 0.5mg every 4 weeks (result the same, but latter is easier on you and your PMR).

That may not be feasible for you I know as you have issues getting smaller tablet doses....but do what you can, and with a slower tapering plan - see link for options - healthunlocked.com/pmrgcauk...

[PMRpro Ambassador]

Of course your blood results have been good if you have always been on enough pred to manage the inflammation! To be at 7.5mg after 9 months is pretty good - but you might have managed to get lower had you kept creeping down at 1mg per month.

There is no fixed protocol - but any reduction plan should obey a few basic rules: the steps should be fairly small, not more than 10% of the current dose although some patients can cope with 2.5mg at a time down to 10mg, and long enough betweem drops to be sure everything is still OK. But many can't - and they should be allowed to go slower not made to feel they have failed in any way.

This is a protocol that has been around for some time - and still in use by Dr Quick:

rcpe.ac.uk/journal/issue/jo...

It was commented yesterday in the PMRGCAuk lecture that it results in a much higher total pred load than the steady reduction plan Dr Saravanan uses - but he didn't tell us how many of his patients have flares on his version which lasts 2 years or what he does when patients flare and that inevitably adds to the total dose of pred.

Everyone is different - and the basic rule is to reduce the dose slowly and watch out for a return of PMR symptoms by sitting at the new dose for a while after dropping. If symptoms reappear - quickly back to the previous dose that was enough, wait a couple of months and try again with a very small step down.

Some people have a very low disease activity right from the start - and they will manage to reduce from the starting dose quickly and easily to a fairly low dose. But that doesn't mean everyone can - PMR is a very heterogenous disorder and different patients need different tapers.

[SnazzyD]

I’m a big fan of the 0.5mg drop because at these low dose levels the adrenal glands need to help out but often don’t wake up quickly. 0.5mg every 6-8 weeks helps one not hit that brick wall that can feel awfully like a flare.

[TheMoaningViolet]

When I am tapering, I like to feel stable on a new dose, and once I have been on a lower dose for a couple of weeks and feel fine, I start tapering again. I reduced from 15mg to 12.5mg to 10mg and then reduced 1mg every 5 weeks (1 week alternating doses, 4 weeks on the lower dose) until I got down to 6mg. After that, I started reducing in 0.5mg increments using one of the slower methods.

I felt a bit brave with my latest taper and reduced my dose from 4.0mg to 3.5mg using the DSNS (Dead Slow Nearly Stop) method starting with a 1:5 ratio (1day new dose, 5 days old dose, 1 day new dose, 4 days old dose etc).

I keep a close eye on my symptoms and can recognise withdrawal issues, but with slow tapers, it has not been a problem. It's worth saying that when I got to 5mg I stayed on that level for 4 weeks and reduced to 4.5mg very slowly as I found it a bit tricky. But after 4 weeks of feeling absolutely fine on 5mg, I felt an increasing urge to reduce the steroids, I just sort of knew that there was no point in delaying it.

If one was planning to try one of the more brutal tapers, I would understand the apprehension one would feel about reducing; If I had to drop 1mg overnight, I would probably not be very enthusiastic about tapering and a lot more fearful of having a flare.

[Paperroses]

I started on the DSNS taper at the end of January 2019 going .5 mg when I felt ready. I had no flares but have moved very slow. I upped it a few times due to sickness or overwork when I felt extra achy for fear of a flare. I went from 9 to current taper of 5mg. I know it doesn't sound like a lot but I 'm doing well and that's just where I'm at. I do get up with morning stiffness and pain but that goes away by mid day so I assume I'm doing right. I think my adrenals are functioning fine so far . I've always been a very active person and I pace myself a lot.