Newbie on the block

[Welshnewbie]

Hi all. Just found this site. So I'm a newbie. Got a very quick diagnosis, actually from a fantastic physio as I went with a knee issue ( post a double hip replacement last year! Which all went exceptionally fine btw). And thought the shoulder pain I'd had was down to overuse from helping levitate my body off and on seats etc. So had PMR undiagnosed for only 4 weeks before starting on 40mg of pred. I was very reluctant to take the steroids at first but 12 hours later pain was gone. It did seem a v high starting dose but now week 3 I start this 5mg reduction each week. I hate being on them but see their effectiveness. I only had 4 weeks of pain but I'm young, only 53. And my quality of life was starting to really drop. I can't believe how some people had months of it undiagnosed. How awful for them. To be fair it was not a GP who Spotted it ... a bright physio came to my rescue. But why am I getting this so young. And I'm trying now to be be super positive and hope I'm an early outer as you all say.. by week 9 I should be on 5mg .. and then what? So glad to have found this site

[SnazzyD]

Hello! Yes, it's all a bit of a shock isn't it? Well done physio! I'm assuming the GP has taken up the baton and is now treating you? As you probably know by now, there is no nice neat test to say you've got PMR and that all there is to go by are symptoms and how well you respond to Pred. Did they do any inflammatory marker blood tests? These aren't fool proof either but can be a good guide if you are one of those whose markers are raised.

Anyway, there are plenty of us 50 somethings, even if docs do say you are very young for this like you are some medical anomaly. Before March I was very active and working, cycling 5 miles to work, all things to all people. Then I opened the wrong door and ended up in this world. Of course one asks, "why?". Yes, one can blame long term stress, life events, certain medications, foods etc that caused your body to attack its blood vessels. In the end you'll probably never know exactly. The next stage is thinking, "right I'll fix this, by following this plan and everything will go back to normal". Depending on your doc, you may or may not have been given the fear of God about Pred, with warnings about having to get off it as soon as possible. Then comes the realisation that of course, with everything in life, it's isn't quite that simple, but there is always someone for whom it is. This condition will go in its own sweet time no matter how hard you push the reduction. Go too fast and you could be back to square one. Other much more experienced people will respond and you'll get the picture.

The good thing about this, is that it'll force you to stop and take stock. You have to, because looking after yourself is key. This might mean changing your life radically or getting back to the same but with tweaks and bail out points if you start to over do it. You'll find this path is very individual but there will be enough similarities most of the time to be able to use other people''notes'. In the meantime, if you can, rest yourself in all ways and treat your body with excellent nutrition, relaxation, gentle exercise, humour, positive things and people and learn to enjoy the ride if you can. Others may or may not get it because you look ok, but it generally better to try to educate them because you need their support. 40mg can be a bit rough with hunger, restlessness and emotional ups and downs, but it'll pass.

Anyway, read lots on here, and my advice is don't rush it.

[Welshnewbie in reply to SnazzyD]

Thanks. So comforting to share all this with peeps!!

[Welshnewbie in reply to SnazzyD]

Btw, I'm taking mine in the evening when home from work with my dinner; most seem here to take in the morning..

[SnazzyD in reply to Welshnewbie]

I take mine in the evening because in the first few hours of it going into my system I feel unsteady, dopey and weird. Most people can't sleep if they take it in the evening. There are also those who wake in the wee hours to catch the peak in inflammatory substances naturally released about 4 am, making the morning stiffness less intense. Bear in mind non-coated Pred takes an hour or two to start going in properly and coated Pred takes four hours plus.

I note you say you are going to work. It may well be that needs must, but be careful. Pred is not a cure, it just stops injurious inflammation building up and possible progression into GCA, while your body decides when to go into remission. Pred can also give you false energy which makes you think you can do it all. It can also make you think you are sharper than you are. Luckily (in a way) it knocked me for six so I couldn't go mad but I did have to give up work, though in the long run that is probably a good thing.

[Rugger]

Welcome!

I agree with all SnazzyD says, especially the last 3 words. In hindsight, I rushed things this summer and my PMR flared - more correctly, it was there all the time and I reduced the pred too quickly. (Click on my name and see my last 2 posts.)

We all hope to be 'early outers', but the PMR will decide when it's leaving us alone.

The 5mg reductions each week may be OK until you get to 15mg, which is a more usual starting dose for PMR. The advice after that is to reduce at no more than 10% of the previous dose, so at 10mg, go to 9mg, but at lower doses drop by 0.5mg or use one of the gradual taper plans you'll see on this site. (See the pinned post on the left.) Reductions are usually over a month or longer, rather than a week, as it gives you time to see if the new dose is enough to cope with your symptoms. If you reduce too quickly and the inflammation builds up into a 'flare', then you have to increase the pred and start over again. My graphs show that - if one person learns from my 'mistake', I'll be happy!

Others will be along soon with their advice for newbies and other words of wisdom and caution! There is also humour on this site, to keep us smiling through.

[Welshnewbie in reply to Rugger]

Yes cheers! It dies high to start at 40mg. My marker read 39, so not even over 50

[SnazzyD in reply to Welshnewbie]

An ESR of 39 is still raised. Many people don't have raised markers with PMR or GCA. Even with my GCA in full flow with my eyes going it was still only 16.

[Mrsd12f]

Welcome to the club, Welshnewbie. Whereabouts are you? If you're anywhere near Cardiff, there's a meeting of the PMR/GCA group in the Central Library at 11 a.m on the 25th. of this month.

Good luck on your "journey".

[Welshnewbie in reply to Mrsd12f]

Ah I'm in the big smoke of London now!!

[Mrsd12f in reply to Welshnewbie]

That's a pity - not that you're in London, but that you can't come to the meeting. Never mind!

[BromleyPen in reply to Welshnewbie]

The London Support group meets soon. You can check out all the groups at pmrgca.org.uk

[DorsetLady PMRGCAuk volunteer]

Hi and welcome,

SnazzyD has given you good advice. Maybe your double hip op has a bearing on why you got PMR, stress of any sort can trigger it. Nobody can really pinpoint exactly what, more’s the pity, if they could, we could avoid it!

One word on your reduction plan, it is only a plan, so if you need to amend it you can, and must. It’s all too easy to go too quickly and pass the actual amount of Pred you really need. Yes 40mg is a high starting dose, unless the diagnosis was GCA, so as Rugger says you should be okay until you get to around 15mg and then you will have to slow down. But, if at any time your symptoms start sneaking back, put your reducing on hold for a week or so, don’t just go on because you think you have to.

Your PMR is unique to you and your lifestyle, not mine, not anybody’s on here, not the doctor’s. You need the amount of Pred YOU need - not what someone else thinks you need.

Read this, it will give you a bit more info

healthunlocked.com/pmrgcauk...

[PMRpro Ambassador]

I was 51 when mine appeared - there are quite a few people on the forums where it started in their 50s and some who were only in their 40s so you aren't that young.

" by week 9 I should be on 5mg"

It doesn't work like that - you are reducing now to find the lowest dose that relieves the symptoms as well as that 40mg did though you may not have as much energy without so much pred! However 5mg at a time is possibly OK until you get to 15 to 20 mg (a far more normal starting dode) but from there you should go slower. 5mg at a time is too much at that stage - no reduction should be more than 10% of the current dose, 2mg at a time at 20, 1mg by 10mg and from 15mg 1mg is often better. Too big steps risks two things: steroid withdrawal rheumatism that is so similar to PMR you think you are having a flare or missing that dose you are looking for. Even 1mg can be the difference there - 10mg may be fine, 9mg may not. Going 5mg at a time makes it to overshoot - then you flare and may struggle to control things again.

The pred has cured nothing - it is managing the symptoms of an underlying autoimmune disorder to allow you a decent quality of life until that autoimmune disorder burns out and goes into remission which it does for 75% of patients within 2 to 6 years. As long as it is active you will need some pred - but certainly a lot less than 40mg, hopefully under 10mg but that may not be for some time. The activity of the disorder does seem to fall off over time for most people so they get to lower doses but how long it will take is impossible to predict.

A more reasonable approach to managing PMR is set out in this paper:

rcpe.ac.uk/sites/default/fi...

Kirwan is a top PMR rheumy and the paper is easy to read and understand. Even so, the first bit is too fast for some people. You also can't stick rigidly to timetables - PMR has a timetable of its own and nothing you can do will change it!

Where in the London area do you live - there are several groups around London in various directions.

[Fran2young]

Hi Newbie

welcome. Like you, i was young, 53 and had just done a 1/2 marathon. Took them 1 and 1/2 years to diagnose me as i don't have raised inflammatory markers. Started on 20mg of Pred. Now down to 6mg. But you have to go slowly. GP and or rheumi will try and get you down quick. But you know your body better than anyone so i would say, listen to your body and take it easy. Very frustrating when you're young and there seems to be no reason for it. But do what is best for you. Gentle Yoga helps me. Hope this helps you.