new to you but not to pmr

Welcome Carol - even though we'd all rather you weren't here!

Once you start on the steroids at 15mg/day (or whatever) to get the initial result, the next step is to reduce the daily dose to a level that just controls the symptoms - the lowest effective dose. I'm sure you'll have gathered that from this site - you've obviously been here before! If you get down to a dose at which it comes back it's too low and you go back to the last effective dose. Most experienced doctors will suggest going back to the dose you are at plus 5 for a short time to control the inflammation, then reducing again. If you have been reducing in biggish steps you might have missed the perfect dose for you, for your disease as it is at the moment - so we suggest you keep your reductions to not more than 1mg at a time, staying there for a few weeks to make sure you still feel good before reduing again. So, 10mg was fine, 5mg was not, back to 10mg for a while and when you reduce again you may find that 7mg fits nicely. Anyway - a reduction shouldn't ever be more than 10% of your current dose according to the really big experts.

The most common cause of a flare is trying to reduce too quickly or too far - i.e. to too low a dose. If you are lucky and the markers show what your disease is doing you can follow them as well as how you feel - and if your markers are rising that means the inflammation is also increasing, you need to stop reducing and probably go up a bit. That can avoid a real flare.

How big were your reduction steps, how far down had you gone and for how long had you been there? Tell us that and we'll make a few more suggestions :D

Have you been over to the pmr gca northeast support group site? There's a link on the sticky on the index page for polymyalgia rheumatica. There's another forum linked to that too - rather more relaxed than here and we are a bit nutty on occasions, but that isn't all bad! They'll provide you with more info and advice if you want any more.

But yes - they'd have you believe you'll be back to normal within a few days on steroids and off them in a short time. That would be nice - but it's rather and ideal world and like most ideal worlds a bit elusive!

Never mind - it could be far worse, you might not have found us :lol:

all the best - and tell us more details and don't go away,

Eileen

Hello carolk and welcome although I'm sorry to hear of the worsening problem that has brought you here. You haven't mentioned what dose you had reached prior to the increase to 10 but, hopefully, the quick intervention by your GP will settle things quickly for you. Unfortunately, flares in inflammation and symptoms are quite common in the first year to 18 months. Like you, I was never completely symptom free down through the doses and only a very lucky few seem to experience that 'luxury'! The important thing here is that you have repeat blood tests before any further reduction, and your GP does seem to be monitoring your carefully in this respect. Look at the 'stickies' on the home page, where you will find mention of another, very active, forum dedicated to PMR/GCA, etc. Do hope you feel better soon.

MrsO

With the first information you read it can be like that ! my first bout of PMR I went form 20mg to 1mg in a year and maintenance of 1mg for a year and no pain at all ! So I am the one in the text book !

2nd time around I am on 5mg for the 6th time in 3 years !!!!! Started on 20mg again The worst flare I had was after 14 months and I had to go from 4mg to 15mg to control it My Dr is of the opinion that you hit a flare hard She was right because I was trying to drift up and it didnt work I think it justr shows the difference between my 2 bouts that sometimes it is just trial and error

My Dr has found now that my correct levels of ESR and CRP for me ( not the same for everyone ) should be around 5 as soon as they reach 10 ( unless its the ESR and I have another infection present ) I start to have problems

Im on a very slow reduction prog now hoping to surprise it But we all have different stories but most people seem to do better on the slow reduction progs

Best wishes

Mrs G

Hallo again Carol. I have replied to you on another thread.

Like Mrs.K I've had PMR twice and I reckon she and I are well qualified to explode some of the myths. Like \"it burns itself out in two years.\" Ha!

Don't let anyone give you the impression that anything about this condition is 100% predictable much less set in stone. Those of us lucky enough to have good doctors are allowed some input and are listened to. With luck they will spread the gospel.

There used to be an offence during the war of sptreading alarm and despondacy. This and the other site ( see sticky at top of list ) are a good antidote.