NHS protocol for PMR

[Wraysbury]

Hi. I’m returning to my Gp in 2 wks and want as much evidence as poss as I know she wants to start reducing me already. She seems to be following a set program, does anyone know what it is pls.

[Longtimer]

Oh dear...a set programme....except we aren`t robots!....please be careful, my last rheumy had a "set programme"...put me in lots of pain, till we came to an agreement, I was to do it my way!....I wish I had known of this forum in the first years of PMR, it wouldn`t have happened....

There are tapering ways at the pace that your body should be able to deal with, that I`m sure others will point you in the direction of...."dead slow" and DL`s method.. print them out if you can and produce to your GP.......good luck....

[Wraysbury in reply to Longtimer]

Thanks. Yes I have those to take already. I agree it worries me, which is why I want to be fully prepared!

[PMRpro Ambassador]

Probably what is suggested as an approach in the BSR (Society of Rheumatologists) guidelines but they are rather fast - BECAUSE most doctor miss the codicil: "Tapers should be adjusted for the individual patient in accordance with symptoms." (or words to that effect).

Ask her. Whatever she is using she should leave you at the starting dose for a month or until your symptoms are well under control and, if it applies to you, the blood markers have fallen significantly.

[Wraysbury in reply to PMRpro]

Thanks

[piglette]

How long have you been on steroids? Normally people start reducing after around four weeks? My rheumie wanted me to reduce 5mg after 3 weeks which was disastrous. Also I still was not comfortable and still had raised inflammation markers which seemed to annoy him. The actual reduction is also important. Some people can take a high reduction initially I couldn’t.

[Wraysbury]

Thanks. I’ve been on them 3 weeks! I’m seeing her at 5 weeks. Atm I feel quite unstable, the pain has gone, but it creeps back as a pernicious ache from about 4 in the morning. Yday I didn’t have an afternoon sleep and today my knees feel scarily stiff. I’m generally wiped out, after one activity per day. I’m staggering and tripping and have legs that change from feeling like jelly to lead to just an alien part of my body!! I’d like to feel that I woke up and felt stable before I started reducing a potentially rocked the boat

[PMRpro Ambassador in reply to Wraysbury]

You aren't "cured" - the pred only manages the pain and stiffness and the rest is due to the actual illness: an underlying autoimmune disorder that causes your immune system to be unable to identify your body as self and so it attacks it in error as "foreign". The effect is a bit like having permanent flu and the accompanying fatigue.

That side must be managed by lifestyle changes and pacing:

healthunlocked.com/pmrgcauk......

You have to identify your limits, stick to them and rest appropriately. And be patient. Some of how you feel MAY be the pred - it is impossible to tell - and so you MAY feel less bad at a lower dose. But you will have to try and see what happens.

The morning return of symptoms is normal for PMR - that is when the daily dose of inflammatory substances is shed in the body. The antiinflammatory effect of pred lasts from 12-36 hours depending on the person - and if you are at the low end of the range the symptoms will return before the next dose is due. Some people split their dose to make the effect last longer and for some people taking 2 lots of lower levels also helps avoid some of the side effects - like wobbliness which isn't uncommon.

It is a steep learning curve - but you will get the hang of it eventually. If you had found having an afternoon rest helped and then missed it - you are likely to feel it next day. Sticking to a routine does help - and straying from it may well result in payback. And you need to identify what doesn't help you - and avoid it or cut it back for a while.

[Hidden]

I don't know if it's of any help Wraysbury, but my experience is similar. Think I've had undiagnosed PMR for at least 2 years. Saw rheumy in July 2018 and 15mg steroid response was immediate and impressive. Pain went, mobility returned within hours.

Treatment plan; 15mg for 2 weeks, 12.5mg for 2 weeks, 10 for 2 weeks then 7.5 for 2 weeks. Thereafter, a 1mg drop per month. Fine at 15 and ok at 12.5, but niggles started. Real return of PMR pain hit at 10 and after just over a week at 10, I gave up, increased to 12.5 and spoke to rheumy advice who've decided I need to be referred back to rheumy consultant. I have an appointment on Tuesday next week.

In the meantime, I'm following a slow taper regime (a couple suggested here, so it's take your pick). In essence, I'm convinced I've been tapering too fast.

I'm now taking the pred at 0400, or thereabouts. Idea being it's the right time to tackle natural bodily release of inflammatories. I'm not sleeping well since starting steroids, so its no problem. I have a stock of small tub yoghurt, consume half, put tabs into second half, consume and return to sleep. For me, that seems to be working better than taking later in the morning. The effects of daily steroid last around 20 hours, for me. And less on reduced dose.

But...at 12.5 and even with a slower taper, those niggles soon rear into sharp and unwelcome pain. And the fatigue wall I've hit in the past few weeks is beyond anything I've ever experienced. PMRPro is right. There's payback every time you do too much. I'm walking through sludge even on a good day, mentally and physically.

Lessons? It's a long slow road I guess. Balance, aka pacing is key and that's the difficult but when your brain says one thing, but the body is struggling. When I feel good, it's easy to do more than the body is ready to accept; it reacts with pain. I think I've taken huge steps backwards, but sometimes it's not enough. If you're tired, give in. Relax. It's so difficult when your mind wants more.

In a couple of months I've gained a huge understanding of a complex syndrome. Mostly unwelcome, but it takes time to put it into perspective. No idea what the rheumy will advise. I'm going to do it my way, which is slower than some medics may suggest.

I hope you can work out a regime that helps and I'll post an update on the rheumy advice.

[Wraysbury]

Thanks

[Hidden]

Hi Wraysbury, I would suggest the 'set programme' does not work for most, however the Dr maybe trying it out with you initially to show what is a appropriate direction to the Dr of your medication. But no more than that allowed. The set P. did not work with me and I wasted 3 years of my life going up and down with the pred dosing ,until I joined this wonderful group. The latest studies and research the DSNS method is the one to follow. My newish Rheumy now ,( with my delicate advice) ,follows the latest and I 'believe' maybe having a two way conversation with my DR. all the best and keep 'listening' to the PMR/Gca column John - Sorry longtimer I did not realise I was repeating the advice!