My Rheumy says my PMR is atypical with a normal CRP . My ESR is 39 . Which she believes is normal and it’s due to my weight - 14 stone . Wants to refer me to physio, this will be excruciating . The pain already makes me feel sick and like I’m going to pass out . She did ‘query’ inflammatory arthritis
And has ordered CK and Vitamin D blood tests & repeat of inflammatory markers .
My pain is in neck , shoulders , upper arms , hips & thighs . Also I do have pain In lumbar area , legs & feet . As have spinal stenosis & bulging discs .
Rheumy suggested my pain could be stemming from my stenosis or diabetes.
2 GPS have said it’s PMR ! I’m so fed up , I dont think my rheumy is listening to me ! She even thinks it’s rotator cuff , but this pain in neck , shoulder , arms , thigh & hip pain started nearly 2 years ago . I’ve been in agony & asked Gp on Tuesday if I can go back on prednisolone & she agreed & will monitor . I’m already feeling relief from the pain .
I really don’t know what to do . Hope I’m not being grumpy or impatient. I understand it can take a long time to diagnose an auto immune diseases .
Thank you
Kind Regards Lesley
Written by
TedTheMaineCoon
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39 is NOT normal, anything over 20 is regarded as raised these days by most doctors. I get really annoyed at doctors who insist on treating theoretical lab results instead of the patient standing in front of them.
Yes, obesity can raise markers - but they aren't so much higher than the patients IMHO. I was obese - didn't raise either of my markers. Patients vary.
Rotator cuffs only account for bicep pain - not the rest. And inflammatory arthritis affects joints not muscles - and rarely responds to pred as quickly as you seem to. Grrrrr ...
Appreciate reply . I told rheumy my muscles in upper arms and thighs are wasting . She said steroids do that . I’ve only taken steroids since April . My muscles started wasting about 2 or more years ago ! Crazy !
I would want a second opinion - though you do appear to have a fairly sensible GP. Trouble is, if you go to one in the same Trust, they are likely to be non-commital rather than disagree with their colleague.
I’ve never had a rheumi I just deal with my GPS who I’ve been able to educate about PMR with the invaluable information gleaned from this fantastic forum. Why not just ditch your rheumie and stick with your GP who seems more understanding. I hope you’re feeling better now you’re back on pred.
My muscles were wasting before I was diagnosed with PMR or taking steroids. Some improvement now that I am not in so much pain and more mobile with light exercising.
Your not being impatient and everyone would be grumpy after the treatment you have received so far.Personally, I'd contact the Rheumatology Department and say that you would like a second opinion.
Luckily, if your GP is happy to treat you for PMR and prescribe the steroids you can continue to get your treatment that way.
Then when you get a physio appointment make sure you get an initial assessment with the Senior Rheumatology Physiotherapist and you can talk about your various back problems and the PMR at the same time to make sure you only receive the moderate exercises that could benefit you instead of make things worse.
If you have your inflammatory markers repeated after you begin you steroids you will need to make a new Rheumatologist aware that they were tested after you had restarted Pred because they may think your results are normal otherwise.
Have you had any recent x-rays or checks in the stenosis and discs?
Hope you get some better treatment soon , take care , Bee
Thank you so much - appreciated. I had my feet done on Tuesday by my podiatrist. She’s a diabetic nurse & set up a clinic for diabetic care & also works at Addenbrookes.
I explained things to her about my rheumatology appointments & 2 GPS saying it is PMR . She said “ If I was you , listen to the GPS” . I had mri check in January this year . All I was told that there are sone changes , but if gets worse, any problems, see Gp or go to A&E . Think I will be seeking a 2nd opinion .
I would agree with most of the replies here. I have been on pred starting at 15mg for more than a year now. The pain you describe sounds identical to that which sent me to the Doctor in July 2022 but it was only a phone call appointment. He was talking about stiffness in the joints and I said desperately no no no it is not joints it is the whole length of my body muscles in pain. Immediately he said PMR and prescribed Pred with all that goes with it in the way of vitamins etc. saying that you could be on it a long time and maybe for the rest of your life. I have a daughter in the medical profession, Community Care Matron, and she has guided me on the suggestion of GP to slowly reduce the dose every three weeks. I was down to a dose of 6mg but the pain stealthily came back. The GP is agreeable to increasing a little to see when and if it improves and stick at whatever dose that is. I have the complication of Graves disease for 23 years, another auto imune disease. which it seems is subject to guesswork and trial and error. When a new GP comes along he/she has another opinion and changes the dose of thyroxine up or down causing another long experimental waste of several months and any change takes at least 6 weeks to show up on blood tests.
I am 87 with a dependent husband and a largish home to look after, I have to keep going so if Pred will do the trick I have no desire to wind it down to a really low dose. I would advise you to make a friend of the GP and describe your pain as often and as clearly as you did. I have heard two years as a possible time scale to get entirely free of PMR so be patient. I feel it is less likely to be Rheumatoid Arthritis in your case as that is often accompanied by swelling of fingers and feet. I suggest explain your symptoms plainly and often and perhaps as suggested, a private consultation would help further, at least with that you get full attention and a longer time slot. Hope you feel better soon.
Thank you so much ! Really appreciate your reply & tips . Yes my whole body seems to be so painful , feels like it’s bones & muscle . I’ve restarted the prednisolone, agreed by local GP . The difference ! The pain has virtually gone , little aches here and there , but i can tolerate that . These auto immune diseases are rather complex .
I suspect that most on here would not describe reducing/tapering your dose every three weeks as slowly. It sounds as if you haven't be taking enough Pred to get on top of the inflammation completely and so it has gradually built up again, hence needing a higher dose to keep/get it under control again. DL's and other examples of tapering in the FAQ'S section.
Bcol....You may well be correct, tapering too quickly because I complain constantly about Pred and weight gain! Caught between the rock and the hard place yet again. I see that this is an extremely helpful discussion place.
If weight gain is your primary problem - have you tried cutting carbs - especially processed carbs and added sugar and limiting fruit? It helps with weight gain and reduces the risk of developing pred-induced diabetes. Some of us have to cut carbs a lot bit for others, even moderate adjustments can be enough.
But all that happens if you reduce too fast and too far is that the inflammation is no longer contained by the pred and over time builds up again so you require a higher dose of pred to get it under control. Which completely negates any perceived benefit of reducing quickly.
I’m already type 2 diabetes. Have been for about 12 years . Still on metformin. I’ve started cutting carbs, processed foods. Been downloading the diabetes uk recipes . Non smoker & T total . I’d love to put the diabetes in remission.
Interesting, I will check out all the FAQs. I was given a pre-diabetes warning but by reducing sweet things and sugar addition, but I haven't addressed carbs as seems a bigger hurdle to overcome. Thank you for the suggestion.
It isn't just that - for most of us it is weight gain that is a bigger problem! Don;t try going cold turkey on carbs, halve the carbs for a couple of weeks, then halve again until you stop gaining or start losing weight. Then you get used to the change more gradually.
When you have all the pain and the wrong diagnosis it is annoying, you know your body they do not. I saw 5 different GP's before getting diagnosed.
I was doing regular 3 days of running events, having driven down to Devon and back and doing 3 races, the GP told me I had been overdoing it and said a few back exercises will do the trick. They will not listen to you telling them that what you have done is normal for you. Tried the back exercises but struggled to get off the ground once lying down!
Whilst taking Pred I did continue to do my running and exercising and contrary to all that I was told I cut down from about 5mg to nothing when I'd had enough of being on Pred.
I was then diagnosed with Vasculitis from a CT scan put on Methotrexate but when I stopped taking that because the blood tests they were doing were not monitoring my liver health as they were supposed to. According to the Rheumy I must be all right because I am not taking their medication anymore, no tests done to prove anything.
Yes I still have some back pain but 5 and half years on from getting Polymyalgia I am not on any medication and able to run and exercise without problems.
So there will be light at the end of the tunnel.
My daughter is doing a degree in nutrition and she is learning that a lot of the research the NHS rely on is out-of-date or not that reliable. So getting an opinion from someone not limited by NHS thinking would be helpful.
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