Hi everyone. This is my first post. I am 63 and live in west Midlands. I have had hip and lower back pain for some years. In June last year I started to experience extreme night sweats and rigours which disturbed my sleep leading to exhaustion the next day. GP tested blood ESR +60 at that time. By October my ESR was 120 raised Crp but all tests x Ray's scans etc. showed no cause of infection. Seen by haematologist who after thorough investigation diagnosed PMR. By this time I was unable to get to work, suffering severe shoulder and hip pain, flu like body ache, chronic fatigue, poor sleep, usually waking anytime around 1am - 3am.and still experience extreme night sweats. Also arm pit pain and sharp pain across middle of back, tearful and very low, lack of confidence. In November I began 40mg prednisolone.
I saw rheumatologists on Christmas eve by which time I was reduced to taking 20mg prednisolone and ESR & crp were in normal range. Symptoms less severe though still poor sleep and fatigue. Taking Codydramol for pain with little effect. Rheumatologists has told me it's not PMR and done further tests which are all negative. Says I'm a puzzle as my symptoms are atypical.
Went back to haematologist today for review who stated i have PMR 8n his opinion as I am currently taking 12.5mg prednisolone and I am feeling much better than previously though still in pain I am managing to pace myself most days to avoid severe fatigue and my levels are still within normal range so he is going to discharged me.
Can anyone please help with any suggestions, thanks
Well it sounds awfully like PMR to me. Furthermore, it sounds like you are not on enough Prednisalone to deal with the inflammation that you have probably been suffering from, for a long time, untreated. I think you would feel much better, back at 15 mgs for instance. 20 mgs is a usual start dose, how can you be “ reduced” to taking the only medication that helps the symptoms. Thank goodness for your haematologist!
Welcome to the forum, please stay with us. You will find it really supportive and informative.
Thank you, what I forgot to mention was the rheumatologists has advised that I reduce the steroids to zero and I am due to cut down to 10mg next week, then 1mg reduction every 4 weeks.
Oh dear! I hope he gets this one day, it will make him a better doctor. I would not taper until your symptoms have settled. If they don’t, then you must find a doctor who understands this disease, where are you?
I saw a different gp at my surgery yesterday who seems to understand the problem and has advised to try the reduction and she will support. She has also advised a phased return to work. I live in sandwell near Birmingham. She said ideally I would be able to get through on 5mg a day.
If it is PMR Codydramol is a complete waste of time to help the pain. Steroids are the only real thing that will help. In fact one way of finding out if it might be PMR is to see if other painkillers work and if they don't it is probably PMR. The steroids should get rid of the pain but not the fatigue sadly. Don't rely mainly on your inflammation markers to check if you are OK, your body is a lot better at telling you how you feel.
Thank you, tbh besides causing constipation the Codydramol has probably been more of a psychological effect, you have pain so you can take painkillers.
It sounds very much like PMR to me. My symptoms were also ‘Atypical’ I started on 20mg and it took about 3 days to ‘work’. I can tell you that I had terrible nightsweats pre-diagnosis and for a good while even on prednisolone. The fatigue and feeling ‘generally unwell’ stayed with me for a long time. My lifestyle had to change overnight as I allowed my body to recover, however, I did keep a level of activity up but at a much slower pace. (Unfortunately I got GCA a few weeks later). I’m in a good place just now and long may it continue, so take your time with it all and you’ll get there too. When people were saying 1,2,3 years or more I was daunted by it all. However, a year has passed already and I’m still plodding along. Keep in touch as this forum and the experts on it have been my saviour on many a long lonely sleepless night xx
On what grounds do they claim it is "atypical" - because what you describe sounds pretty typical to me! I would accept it if they had an alternative - but obviously they don't!
I'm having a flare that feel more like the original symptoms than anything I've had in the meantime and I can say "Check" to almost all you say. So what don't they like?
I'm not sure to be honest but I've been to see a gp today (a different one as my practice is having a few changes) and I've found her to be very helpful and knowledgeable. She appears to be supportive in the condition and helped me to get a plan in place which I will be managing myself with all medications on repeat prescriptions. Should my symptoms become worse she would see me straight away. She said ideally she would like me to reduce down to 5mg daily of prednisolone, I have been advised to go to 10 mg next week after 2 weeks on 12.5mg, and then reduce 1 mg every 4 weeks.
So sorry that you are suffering a horrible flare PMRPro. I know you never complain but this sounds like a really nasty one. Cuddle up, keep warm and follow all your own advice. So far the year of the Rat is living up to its name - for so many of us!
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PMR or not?
PMR OR NOT 
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