Reduction

[Peggy16]

Hi I’m quite new to this site, my rheumatologist told me to find out all I needed to know here, my problem is I have reduced from 15mg when first diagnosed in March 2020 and am now on 4mg of prednisolone and my rheumatologist has told me to reduce by 1mg every 8 weeks, I still have PMR pains in the morning which sometimes are with me all day, but are not crippling pains which I had when diagnosed. What I would like to know is should the pains be at zero before I reduce or is it normal to still have aches and pains whilst reducing. Hope you can help I’m so confused as to what to do

Thankyou

[DorsetLady PMRGCAuk volunteer]

Hi, and welcome,

15mg to 4mg within a year is quite quick.

The aim of the taper is not to get to zero as quick as you can, but to find the lowest dose that gives you the same level of relief that the initial dose did. So that’s what you need to keep in mind.

So people get 100% relief from all pain, some don't...the expected level is “at least 70%”...

Some pain may be expected in the morning before you take your pred, but it certainly shouldn’t last all day......that indicates you are on too low a dose.

Can you recall the last dose you felt okay at? If so, maybe go back to that, or at least increase by and extra mg or two and see if that resolves the problem.

1mg every 8 weeks is reasonable, but some find it easier to take it in 2 steps, so 0.5mg every 4 weeks (white uncoated pills can be cut - pillar cutter at any pharmacy or online). Or use a slower taper such as this - healthunlocked.com/pmrgcauk...

Ideal world is no pain before you reduce, but as much as is achievable is probably more likely.

Might also like to have a read of this - healthunlocked.com/pmrgcauk...

[Peggy16 in reply to DorsetLady]

Hi thanks for your reply, I was on 15mg for 2 weeks, 10mg for 4 weeks, 7.5mg for 4 weeks and 5mg for 6 months 4 mg for 8 weeks and all was fine apart from stiffness and slight pain in the morning, then the nurse told me to reduce to 3mg and that’s when it all went wrong sometimes the pains lasted all day. I did ask the nurse if I should go down by a half and she said no 1mg at a time is fine So this is why I’m here asking your advise. I’ve copied your taper chart, and I’m going to follow that after I’ve gone back up to 4mg for a month. I think most people new to PMR think it’s just a matter of tapering and leaving steroids behind , well I did anyway Thanks for your advice. This is an excellent forum

[DorsetLady PMRGCAuk volunteer in reply to Peggy16]

Yes, your taper was very quick, and although you felt okay most of the way, your inflammation was obviously building up slowly, and the drop to 3mg was just much!

Your nurse may think 1mg is okay, but your PMR & body would probably prefer 0,5mg a time!

1mg every 8 weeks or 0.5mg every 4 weeks gives the same result at the end of the day, but it’s easier......many medical people don’t appreciate that 0,5mg especially at such low doses really does make a lot of difference.

Not only do new patients, but lots of doctors also think it just a matter of tapering....it’s more subtle than that.

Just make sure 4mg is really enough to get back on track before you consider reducing again. If not, then you know what to do.

[PMRpro Ambassador in reply to Peggy16]

Dropping from 4 to 3mg was never likely to end well in PMR! No drop should be more than 10% of the current dose - and the lower you get, the nearer to are to what you are looking for, the lowest dose that manages the symptoms! You seem to have got there for now - 4mg. Getting to 5mg after only 2+ months is really really good. But it doesn't mean the rest will go so fast.

[PMRpro Ambassador]

Sounds as if he needs to find out what you need here too! Have you ever been relatively pain-free all day? What were you like at 15mg before you reduced then? At what point did things start to go downhill? Have you ever told the rheumy you still have pain?

DL has already explained most of it and to get from 15mg to 4mg in under a year is pretty quick - on average it takes just under18 months to get to 5mg for 6 months without a flare. If it were me, I'd stay at 5mg for a couple of months and see how you are.

[piglette]

You should be as pain free as when you first started on pred, if not, STOP reducing. You may need to go up a bit to hit the PMR on the head and get it under control again.

[Peggy16 in reply to piglette]

Thanks I’m going to do that as all was fine on 4mg