Tapering

[Tappo]

so, after being on steroids for just over 7 weeks and having it increased to 20mg 5 weeks ago, l finally have my PMR symptoms 95% under control. GP is now badgering me to start tapering immediately. I’m worried it’s a bit too soon and wanted to wait for a couple of weeks to see if symptoms go completely, to reduce the risk of a flare. I can’t find anything in the research that suggests the optimal time to start tapering in relation to symptom control. GP has agreed a 2-3 week wait. Any thoughts/advice would be gratefully received 🥰

[DorsetLady PMRGCAuk volunteer]

Most guidelines do suggest 3 weeks provided your PMR is under control, but do also state it should flexible and adjusted to suit patient.

At 5 weeks on 20mg and feeling 95% better, I wouldn’t say your GP is badgering you, and having agreed another couple of weeks, would say compared to many they sound very reasonable.

Usual tapering from there would be in 2.5mg steps down to 10mg at 3 weekly periods… but would suggest 1mg a time [particularly from 15mg] and at monthly periods.

I did send link to my info post previously, so maybe have another read of that.

Good luck.

Guidelines from charity’s site -

academic.oup.com/rheumatolo...

This from NICE - based on above-

cks.nice.org.uk/topics/poly...

[Tappo in reply to DorsetLady]

Thank you. I was just concerned as I have been very slow to respond to the steroids, only just this week experiencing this level of positive response. Thanks for your help. I did read and print off your info in the previous link, so have that as a guide. Thanks again.

[DorsetLady PMRGCAuk volunteer in reply to Tappo]

Not everybody gets the miraculous response that many doctors seem to expect - but your GP does sound more like one of the sensible and cautious ones.

Hang on to them… 😊

From personal experience ( GCA not PMR) a good stint at initial dose does help overall.

[Tappo in reply to DorsetLady]

That was my thought – thank you.

[PMRpro Ambassador]

Even some years ago before the "taper immediately" trend set in, patients rarely stayed at their starting dose for more than 4 to 6 weeks. To some extent it depends on what symptoms are leftover. I had a dramatic response in 6 hours for all the stiffness and most of the muscle pain which then improved steadily over the following few weeks, I started to taper after about 6 weeks back then but it was probably 3 or 4 months before the hip and groin pain due to bursitis faded but it did continue to improve despite the lower doses.

I think your GP is being fairly sensible wishing to see some tapering and quite reasonable if they have agreed to wait another couple of weeks. Some people DO take that bit longer initially - you can't count the first 2 weeks really since you obviously needed more pred to get on top of the existing inflammation, You have to have enough to get the springclean effect.

[Tappo]

Wow! You responded really well to the steroids. Unfortunately I didn’t. I have literally only had about five days with symptom relief at 95%, hence my reluctance to just jump onto a tapering straight away. Fortunately, my GPS is brilliant and very understanding. However, he wasn’t following nice guidance and suggested a drop of 5 mg straight away. I gently negotiated 2.5, which we have agreed I will start in 2 to 3 weeks.

Are you completely off steroids now?

[PMRpro Ambassador in reply to Tappo]

There is no NICE "guidance" - there are articles written by medical writers who just draw on medical literature. There are loads of recommended options including from the Rheumatologist Socitery which are marginally better, suggesting 2,5mg steps but ALL say "adjust for the individual patient" which is mostly ignored! You can do 5mg at high doses, you can do 5mg in other uses of pred - but NOT in PMR.

I fear not, it is more than 20 years since my symptoms started, it took 5 years to get a diagnosis (which I made) and I have been on pred for over 16 years, still at 7mg and that is with fortnightly injections of Actemra (I live in Italy so that is possible, I dread returning to the UK). As it is I am well managed and stable - and luckily my rheumy is a world name in the field.

[Tappo in reply to PMRpro]

Gosh – you poor thing!

the nice guidance I was referring to, was what you put in the link above. That gives a recommended management for tapering. Thanks for all your help and I wish you well with your progress.

[PMRpro Ambassador in reply to Tappo]

Oh I knew what you meant - but it isn't official guidance issued by NICE, they kindly allow their platform for access, and there is far better advice elsewhere. A lot of GPs will tell you they "have to do it this way" because it is official NICE policy. It isn't, there isn't any.

[Tappo in reply to PMRpro]

Good to know- thank you

[Excelsior80 in reply to PMRpro]

Updated guidelines being worked on rheumatology.org.uk/news/de... ... i hope GPs know where to find latest for all the possible conditions they may come across! seems complicated to me ....

[Tappo in reply to Excelsior80]

Thank you for you.

[PMRpro Ambassador in reply to Excelsior80]

Pleased to see Max Yates is chair - I'd been led to believe it was another N&N consultant. Max did his PhD in PMR fatigue. Terrific guy.

[piglette]

If you have been OK for five weeksI would have thought you should be OK to start to reduce the steroids. I found I could not do large drops although some can.

[PMRpro Ambassador in reply to piglette]

On 20mg for 5 weeks, relief 5 DAYS!

[piglette in reply to PMRpro]

Ah did not read it properly!! Sorry Tappo.

[Tappo in reply to piglette]

no problem at all

[Tappo in reply to piglette]

I haven’t been okay for five weeks. I’ve had about five days, hence my reticence.

[piglette in reply to Tappo]

In that case take it easy, the mantra with PMR is rest, rest, rest.

[Tappo in reply to piglette]

yes, that is something I’m learning 🥰. Thank you for your advice.