Early tapering advice/suggestions needed

[44blue]

Diagnosed very recently with PMR - was on 15mg for 21 days and then 20mg for a further 29 days as there was still aching/pain/stifness - which was then much better. Then the GP moved me to 17.5mg - 9 days ago and some of the pain/aching is back. Can anyone suggest what might be happening and what I should do? My GP is contacting me today/tomorrow about how I am and will be ordering another CRP test. Thanks very much.

[PMRpro Ambassador]

Hi and welcome.

While 15mg seems to have become the traditional starting dose, it isn't enough for many to get a quick and total result. The 2015 Recommendations acknowledge that by setting the starting dose as "the lowest effective dose in the range 12.5 - 25mg".

Until any existing built up inflammation is properly cleared out, it can be very difficult to reduce the daily dose without symptoms returning especially in hips and shoulders if there is bursitis present. It was 4 or 5 months at 15mg before my hip, hand and foot pain had been cleared out. It was over 4 years before I could get below 10mg and I have always required a relatively high dose of pred - some people do. Where have your aches and pains returned? How long was it before you were diagnosed?

Either you need longer at 20mg, trying 25mg is not unreasonable, or your GP could try injections if your aches could be bursitis.

[SnazzyD in reply to PMRpro]

You can sort of see why the GP did that because the Jan 2023 NICE guidelines puts the thought in the head that 15mg is the start dose with no obvious caveats. The reduction is about the same as 44blue’s. Sadly it also says “typically treatment is required for between 1-2 years”. Why is it not going by research from leaders in the field? On the plus side there is a link to this forum.

[PMRpro Ambassador in reply to SnazzyD]

I know - but I don't think anyone has published solid work on the duration and a majority still hold the view if it isn't gone in 2 years, it wasn't PMR. Especially Americans.

I get the impression that all over Europe it is far more accepted it lasts longer than in the English-speaking world. And I know that if work was done anywhere else - a lot of English-speaking doctors don't think it is valid. As if PMR is different according to what language the patient speaks.

[LemonZest11 in reply to PMRpro]

Thank heavens they seem to be enlightened in Australia, or at least they'll listen, in my experience.

[PMRpro Ambassador in reply to LemonZest11]

A compatriot of yours has just been put on MTX after getting to 5mg pred in a year - wasn't good enough for her rheumy ....

[LemonZest11 in reply to PMRpro]

There's always one, as you know. My experience has been different.

[44blue in reply to PMRpro]

Thanks for replying. I’m not sure when it started - I’ve had hip aching/pain, on and off for a couple of years. Sometimes it disappeared altogether but it has been more present over the last year - I put it down to being too heavy. In Dec 22 it got worse and in March I woke up unable to get out of bed. I waited to see a GP for two months, in part due to thinking it might get better but also I couldn’t get an appointment due to the GP practice amalgamating with another. The pain/aching is in my hips. I asked the GP about Bursitis - but he dismissed it as the pain is at the front of my hip and he said that Bursitis affects the sides. This is where the pain originally began two years ago. I can’t walk without crutches - since January.

[PMRpro Ambassador in reply to 44blue]

Iliopsosas bursitis can affect the front of the groin. It is trochanteric bursitis that is at the sides

[44blue in reply to PMRpro]

That is what I thought but the GP dismissed it. Not sure where to go with this as my GP is not at work and I am loathe to ask another one to step in. I have increased my Pred back to 20mg (yesterday and today) - no improvement yet. Is that the right thing to do? Hoping to speak to the GP tomorrow - but not sure he'll be available.

[PMRpro Ambassador in reply to 44blue]

I have never found oral pred does much for bursitis. But I thought your GP dismissed the idea? Sometimes not a bad thing to have another in on the problem.

[DorsetLady PMRGCAuk volunteer]

You need to honest with your GP, but are you thinking that because you are on steroids that's it - everything will return to normal. Not being rude, but sometimes the doctors lead you to believe that...and it's not true, especially if as mentioned by PMRpro the accumulated inflammation pre diagnosis has not been cleared properly.

You have an underlying illness that need managing - and that means you have to curtail some of your previous activities...maybe have a re-read of this link I sent previously - and as I said then, the further link about pacing yourself... something that many new patients find difficult initially

healthunlocked.com/pmrgcauk...

[44blue in reply to DorsetLady]

No, I have taken on what you said about not overdoing things and have remained quite sedate. I am accepting that there are now issues of exhaustion and tiredness from doing very little. I think you are right and the GP believes that I should be ‘better’ with the steroids but things are still far from normal for me.

[DorsetLady PMRGCAuk volunteer]

Unfortunately exhaustion is part and parcel any autoimmune disease - add in the aches and pains and like others would agree that you probably need a bit more Pred…or you have more than “just” PMR.