Morning ! I am sure you amazing humans will be able to advise as I’m not sure what to do . Diagnosed in Feb and put on 15 mg pred . Due to my age (51) both Dr and Rheumy didn’t think it could be PMR but when responded in hours to pred agreed. CRP was raised but not as high as they usually see. Anyway , again due to age (?!)) only 2 weeks at 15, 2 weeks at 12.5 and 2 weeks at 10 then to 7.5mg. Pain definitely came back so put myself back to 10 mg for 2 weeks and now slow tapering between 9 and 8 mg. Problem is my neck and shoulders are so stiff , waking me in the night and even after taking pred in the am ..6 hours later symptoms not all gone . Is this normal ? Should all symptoms go after pred kicked in ? Did think about setting alarm in the night to see if helped but my gut feeling is that I’ve never really got hold of the inflammation as reduced so quickly at the start . Do I start again ? I was better at 10 mg but still had some stiffness . Is it supposed to all go away when pred kicks in or are you supposed to live with some level of inflammation as long as it’s tolerable. Thank you so much !
Flare or normal ? : Morning ! I am sure you... - PMRGCAuk
Flare or normal ?
I think your gut feeling is correct. 10mg would probably be a good place to go back to and then taper much more slowly. I reduced by 1mg at a time once I got to 10mg, and only every 4weeks. Someone much more knowledgeable will be along soon and give you a full explanation I'm sure. Good luck.
Thank you ! I agree
No - you should NOT try to live with some level of inflammation. If you aren;t on enough pred to clear out the effect of the daily new shedding of inflammatory substances the inflammation will build up over time - like a dripping tap fills a bucket eventually however slowly it drips unless you are scooping out some water, at least the same amount as is dripping in. The level of relief you get at your starting dose is your guide - it shouldn't be worse at the end of a taper step than it was at the beginning.
It is possible (even likely) that your neck and shoulder discomfort is not "just" due to the PMR itself but to myofascial pain syndrome forming trigger points in the muscles and making them tight and even spasm. That responds far better to more targeted approaches such as therapeutic massage to relax the spasm and exercises to stretch the muscles involved.
medicalnewstoday.com/articl...
is a good general article - there is a fair bit around if you google and quite a bit on the forum because it comes up quite a lot.
I do wish this ageism could be banned! 50 is generally accepted as the age above which PMR should be considered - but it doesn't mean under 50s don't develop it, it means it is less common. Prof Mackie says she has several patients in their 40s and when it comes to knowing about PMR she's probably top in the UK, I was 51 - in the 18 years since they haven't managed to identify any other cause, I am a nice textbook case when it comes to symptoms. Age and blood markers are not - never had raised markers - but that is something that tends to go together, young patients probably have a slightly different version. And of course it compounds itself: you are young, they believe you can't have PMR if you are young so it is ruled out or not even thought about. And the diagnosis in a younger patient is missed.
Thank you so much ! What would we do without this forum …much appreciated as you just don’t know what you should be putting up with . The inflammation is definitely building up as the relief i am getting is less over the last month from the pred. I do have regular massages and try and do yoga stretches etc but I will have a read thank you 🙏 - my gut feel is that that they tried to get me to 7.5mg so quickly that I haven’t had enough time to get hold of the initial inflammation . Agree re the age - that’s why I love this site or I would be doing exactly as they told me ..would be on 5mg now and in agony ! Think I will try 10 or even 11 and get some stability now I know I’m not supposed to be living with inflammation…thank you so much !
Not only the initial inflammation - you aren't heading relentlessly to zero, you are looking for the lowest effective dose and if the symptoms are increasing with time - you have overshot.
They cannot forecast when and what dose you will get to and the median time to get to 5mg is more or less 18 months. Everyone is different for a whole host of reasons and no-one has told PMR what the doctors plan is. It is in charge - however disappointing that may be to the medical school graduate who thinks they are the boss. PMR just sticks up a finger to "I'M the doctor ..."
Thanks for that question, it’s exactly what I had been wondering, good to know you shouldn’t be living with inflammation. I’m going to taper very slowly, my doctor was doing it too quickly
It’s so hard to know what you are supposed to tolerate - I feel so much more empowered ! Good luck 🙏
Just for information, I do a Trigger Point Pilates class twice a week which works on myofascial release- I know this isn’t for everyone but has helped me a huge amount - probably best to Google it as it’s tricky to explain
Who does such things? Never heard of it - sounds intriguing 
Hi
Much too fast a reduction -no wonder you’re having issues.
You might have been okay at 10mg, so try that first, but if you’re not happy at it then a bit more might be required to mop up the inflammation that has obviously had a chance to build up again.
Stay at whatever dose you decide is working for 3-4 weeks then reductions of 1mg per month -provided you feel okay .
Might like to read this -
healthunlocked.com/pmrgcauk...
Thank you so much - what I was feeling but wasn’t sure how to handle it so thank you ! 🙏
I do wish that doctors would not insist on people tapering so quickly, it is almost certain to end in disaster. You should generally feel like you did on the initial dose once the steroids had kicked in and you had that wonderful pain relief. Two weeks sounds too short a time to me. My rheumy insisted on reduction after 3 weeks of 5mg and that was a disaster for me. You should go back to the dose where you last felt comfortable, stick there for a while to make certain everything is OK and the start reduction again. At 10mg I started to reduce by 0.5mg every four weeks which worked fine for me. Personally I would not reduce more than 1mg every four weeks at that dose.
Thank you so much …I’ve now got the confidence to take control of my dosage and listen to my own body….and not just be told what to do !
The trouble is we have been taught to listen to our doctors as if they are gods!
I was dx with PMR at 51 (eventually , it took the GP 10 months to recognise it) and had so many problems with doctors over the years telling me it couldn't possibly be PMR as I was too young. Sadly it was and I wasn't. Also sadly I was tapered too fast and too soon in the first year which left me in agony. So I would read up all you can on here about every case being different and how some people just need more Pred to manage the inflammation and then go back and discuss a higher dose with your GP. Also worth calling th charity Helpline pmrgca.org.uk/
It took my doctor 10 minutes to give me a diagnosis. He asked me two or three questions - to raise my arms above my head, to sit down and get up without touching the chair, etc etc. The following day I had a blood test (ESR 132, CRP 100). the next day the tablets arrived.
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