I have just been diagnosed with PMR after over 12 months suffering.
I first approached my GP around 12 months ago thinking I made had RA, but the triage nurse I saw, following blood tests and an x Ray told me there were no markers for RA and that I had localised OA.
No further follow up was offered and my symptom persisted to a varying degree until recently when suddenly they became significantly worse, to the extent that I was frightened by it.
Using the oatched system for booking got me an immediate urgent appointment with my FP the same day.
I have been put on 15mg prednisilone now and have been booked for blood tests and a scan.
I am so relieved that at last the problem appears to have been identified, though the prednisolone regime is confusing and I don't really understand how it works or how long U will be on it
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Bridekirk
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Hi and welcome. Well, just goes to show practice nurses need a bit more training when it comes to rheumatological symptoms. It might not have been RA but there are well over a hundred other things it might have been as well as some even nastier options.
Usually DorsetLady would reply with her welcome post but I imagine she is rather busy just now - heading off to New Zealand today!! So I will give you the link to start you off on your learning journey:
Have a look at this post -quite long and a lot to take in early days, so do save it and go back to it as you get to know your illness better. There’s always someone around to help do please just contact us on the forum
The pred is to combat the inflammation that is causing the symptoms. You have been started at the usual sort of dose - which may or may not be enough but it will take a couple of weeks to be sure if it isn't enough - you should get a 70% global improvement in symptoms fairly quickly. That means they don't all go altogether but you feel a LOT better and then over time it should improve more. The pred hasn't cured anything - it is a management strategy and once the symptoms have been controlled by clearing out the accumulated inflammation, the dose should be reduced slowly to find the lowest effective dose, the lowest dose that gives the same relief as you got with the starting dose. So do make sure if there is still something lurking that the GP tried 20mg to be sure you have the best result. You are never heading relentlessly for zero - so don't be bullied into reducing the dose if you start to get a return of symptoms.
I'll leave you to read DL's post and mine for now or you will be buried in info overload! Then come back and ask any specific questions you might have. They will always be answered if we can or we will direct you where to find answers.
Hi, and thanks so much fir all the information and the welcome, it's really good of you to take the time and trouble and I really appreciate it !
In one way its a relief to get some positive info that is going to help me on the road.
I took my first dose at 5 am after a very early breakfast as suggested by the doc due to potential sleep problems.
I have to say a feel rotten at the moment and obviously still in a lot of pain, but am telling myself that I think I need to adapt to this rather than try and override what is going on.
I have been worrying g for almost a year and getting this off my chest is a great help.
I will look at the link as soon as I sign off. Thank you again for your support x
That's why we are here. I hope you get as good a result as I had - barely able to move to walking up and down stairs normally in 6 hours for me although it was another few months before everything was really improved, bursitis took longest. However - that doesn't mean it will be an easy ride, especially with having had it quite a while, and never forget: the pred has cured nothing, it is a management strategy and trying to force the taper too fast or too far will result in a return of symptoms. You need enough - even a bit too low and the inflammation will build up again.
I have been having a look at the various sites recomended and yes it's all very complicated.
I get that there is no cure for PMR, but does that actually mean you have it for life ?...... but then I can see people get rid of it and it never comes back, so doesn't that mean they are cured ?
Also I'm confused over taking these meds a little
I get the impression that you can feel great in a very short time but there seems to be a very long "tapering" time ..... up to 2 years, so does that mean I could potentially feel great in 3 months but still be on news for up to 2 years.?
Is feeling good considered to be " remission" rather than cure?
Sorry if I am being dense but I didnt even consider these questions when I was prescribed and the GP didnt explain anything. I had no real idea what it was he told me I had ohh dear !
No, you may not have symptoms for life - unlike most autoimmune disorders it is classed as a self-limiting autoimmune disorder, for something like 95% of patients at some point the underlying autoimmune disorder that underlies the inflammation burns out and goes into remission. But the propensity for the immune system to go haywire remains - and something may fan the flames into life at some later point and you have a second or - if really unlucky - a third lot of PMR symptoms. But that is for a minority.
In the meantime, pred is not a cure but a management strategy for the inflammation and used well and carefully relieves the symptoms and allows a reasonable quality of life. For many patients they are able to return to a normal way of life and we never see them here because they don't have problems and need advice. But pred is your friend in the meantime and used well doesn't lead to massive problems - yes, there are adverse effects but not as bad for the majority of patients as some people might like to suggest. Most can be minimised, mitigated and even avoided altogether when you know how.
Don't panic, slowly work your way through the links and ask questions - but preferably not too many at once for your own good or you will end up with information overload!
Once again I am so grateful. Sorry for the bombardment but this has been a bolt from the blue,but Iam slowly getting to grips with things and this is helping enormously
Just keep reading and asking questions there is always someone on here going through the same thing. It is hard to readjust your life, especially when the Pred keeps the inflammation at bay and you feel ok, but you will know if you overdo anything! I was diagnosed in May and started on 15mg I am down to 7.5mg now and won't change that until the New year. I am lucky in that my GPs allow me to dictate my reduction timescales.
my link does explain most of those things-but it s nutshell -
there is no cure, but it is a self limiting disease so using goes into remission - but no one can say whether that 2years, 4 years or longer -or anywhere in between
So you manage the symptoms with Pred (steroids) initially at a dose high enough to get the built up inflammation under control as well as dealing with the daily build up.
Medical remission (ie.all symptoms under control) is not the same as full remission (PMR gone)
Strange, yes. The relief of having a diagnosis is enormous, isn’t it? Now you have to learn to live with it and work with it to achieve a good quality of life. The miracle that is pred is a double edged sword but it manages the inflammation very well as long as you are on the right dose.
PMR comes in all shapes and forms, and you will find yourself on a journey that might not be the same as the next sufferer. This forum is the ideal place for information, advice and support from people who have been through what you have and will be there for you. Welcome.
My PMR journey took nearly 3 years. Like you, I started on 15mg of Pred which for me, was almost like a miracle 'cure'. Then using info gained on this forum, I devised a long, slow tapering plan using a spreadsheet which my GP was happy with. Nearly 3 years later I was down to 'Pred zero' but it was still about 6 months after then that I realised that the PMR had finally left me.
You need to start on a dose of Pred that relieves your symptoms sufficiently; 15mg may not be enough. And then, taper the dose very slowly; don't try to rush it just because you feel better. As PMRpro says, the Pred is reducing the symptoms but not 'curing ' the condition.
I was diagnosed 3 weeks ago and since then I’ve immersed myself in PMR, reading everything I can find. A couple of days ago I pulled everything together into a condensed form partly to get a clear picture myself and partly for my family as there is a genetic component - for warned , fore armed.
I’ve attached my effort in case it is of help to you. Please bear in mind I hadn’t heard of PMR 3 weeks ago so some of the detail may be debatable but the overall picture I think is correct hopefully.
Do you have this as a file? Or could you post it as a thread? I'd love to see if it would be helpful more generally but I'm struggling to read it on the computer and can't work out a way of enlarging it.
The genetic bit isn't really a genetic aspect so to speak - it isn't hereditary in the way many diseases are like cystic fibrosis or muscular dystrophy. It is a disease that appears in Caucasians, especially with Scandinavia genes and a sort of constellation of genes is required to make it more likely that the situation will arise that you develop PMR but they alone don't cause it, there must be a whole range of other things coming together for it to happen. That's a rubbish explanation but my brain feels a bit fried!!!!
I have it saved as a word / pdf file. I can email or try to copy and paste into a thread tomorrow when I have more time to look at it.
It definitely looks as if there is a genetic factory to PMR. I found out two days after diagnosis that my half sister was diagnosed with PMR in 2000. She lives in Poland, I live in UK and we’ve never lived together. I had no idea! And I’ve seen quite a few posts on here where people refer to close relatives also having PMR.
My daughter was told she had MS markers some 20 years. I’ve been wondering if PMR in myself and my half sister and my daughter’s MS markers are all connected.
Very interesting.... When the GP asked about family history I didn't even think about mentioning my mum, it was only after starting to understand what was happening I thought maybe I should have
Thanks for posting this, and yes as I think we both recognise how complex this is.
So tying this in with what I have come to understand, thuis is not a lifelong condition, but one which resolves naturally I think I am right in understanding this ) initially when it is referred to as an illness with mo cure my thought was " oh no"! Its forever !
I am still trying to get a handle on the idea of the condition "resolving" at some future date. I wonder if this means it goes away forever? Or is this period when it goes away really just "remission" and what is the likelihood of it coming back given that you have had it before.
I know these are questions that don't really have answers. I guess I just want a goal to work towards but I think I probably need to stop thinking in those terms.
It isn't that common to have second episodes of PMR but it does happen. If it relapses within 6 months of stopping pred, it is far more likely it was still active but at a very low level of activity and the inflammation was being managed by as little as 1/2mg pred or even less but zero was a step too far and just like a dripping tap fills a bucket sooner or later, the inflammation builds up and eventually reaches a level that you can feel. But it can relapse after a year - or 10 years or more and anything inbetween. But all say, their different episodes of PMR were totally different, even differnt symptoms, different doses worked and different durations. A very few very unlucky people get it 3 times. And even fewer have it for life - I've had PMR symptoms for 20 years and been on pred for 16 years. There are some things I can't do now but you just do things differently or different things. I continued skiing and when I gave up it wasn't due to PMR. I can't hike in the mountains which was part of the reason we moved here - but I was able to walk other places until Covid and now, not sure I want to walk that much!! We continued camping and travelling for work and holidays combined until Covid and my husband became ill.
Your goal to aim for is living well with PMR and pred - and it can be done. You can't control the illness - but you can control your diet which can help a lot. Cutting carbs helps avoid weight gain with pred and reduces the risk of developing steroid induced diabetes - and for many people helps the PMR symptoms as well. It is a case of being adaptable - and that in itself is a challenge to learn to deal with.
I am guessing the way this is managed is not as easy as it sounds
I mean I am not going to be given a load of prednisilone for me to decide how much and when I need it going forward. It will be very much under the control of the GP, which presupposes a lot of checks and balances each time we have a flare up etc.?
Fortunately as things stand I do have a very sympathetic GP who dies seem to know the score.Though I didn't have a chance to ask so many questions, but then again I didn't know what had hit me !
One final question.......
Am I right in thinking that when my Pred runs out on Jan 6th ( the day I re visit my GP ) Ii will not be the end of my taking the stuff? I think I am right just looking for confirmation.
I called in for blood to be taken today and asked if I should proceed with my Flue and Covid. They told me yes.
I have not taken the Covid for the past 2 years as I have never been well since having the first dose, but have taken advice and will reluctantly have it so both will be given to me on Friday.
"Am I right in thinking that when my Pred runs out on Jan 6th ( the day I re visit my GP ) Ii will not be the end of my taking the stuff?"
I'm afraid not - pred cures nothing, it is a management strategy, just as pills for high BP don't cure the hypertension but manage the level as long as you take the pills. And you need the pred as long as the underlying autoimmune disorder is active and creating inflammation. How long that takes is anyone's guess - anything from 1 year (very unusual) or indefinitely (also not common, maybe 5%). But you will get to a lower dose of pred if you go about tapering carefully and how we advise. You can't force it or the symptoms will return if you try to manage on too low a dose. You can't fight PMR, it always wins. You learn to accommodate it and live together.
DL's reply reminds me that I meant to ask if you had read her welcome post - including all the links in it. It was carefully put together to answer these basic but all-important questions so it really is worth studying it carefully and making sure you know how to find it again because you never take it all in the first time.
Hi. Yes indeed,and very helpfull, sorry if I have been pestering, I was just seeking clarification on certain aspect that were not clear to me.
I think I have a working understanding of how all this works so I will leave you all in peace now ☺️ abd thank you all again for your patience and vest of luck to all on here who are suffering. I Hope you all achieve peace xx
Welcome to the forum which has been invaluable to me on my PMR journey. PMRpro, Dorset Lady and others give up their valuable time to help us. I wish you well on your PMR journey 🌸
Sorry to hop in here - just because the Rheumatoid Arthritis (RA) marker (it's called the Rheumatoid Factor - RF) in your blood is negative it doesn't rule out RA. I have been diagnosed with RA for 30 years now and probably had it for another 10 before. My RF is still negative. It's called serum negative RA.
The lack of RF factor is disgraceful. If I had a pound for every time I was told that my bloods were normal, so that meant there was nothing wrong with me.
Well I have been struggling with pain, lethargy,poor sleep,brain for, fatigue for well over a year and I appreciate that not all the symptoms were probably RA related, but the over riding ached muscle and joint pain were causing a lot of it and they simply sent me pack9ng after those clear bloods, though I knew there was something Thatcham getting progressively worse until I just could not take it any more..... The new GP actually listened to me thank God
A certain generation coincided with the marvels of technological innovation and were led to believe the lab results could replace clinical skills and never lied. But there are going to be exeptions to most things - that is what they forget.
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Newly diagnosed. 
Newly diagnosed PMR
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