I'm in a bit of a quandary about PMR. My physiotherapist was treating me for hip pain and said he thought I had PMR as I wasn't responding to treatment. My blood results were marginal and my doctor put me on prednisolone. I took the first dose in the morning and by evening the pain had gone. However the Dr contacted the rheumatology department and was told, going from my blood tests, I didn't have PMR and I should come off the prednisolone. I began reducing and the pain came back so I returned to the original dose and am now reducing more slowly.
Typically I was experiencing hip pain after sitting a while and would have to hobble until my hips settled down. Also going upstairs would be painful. I did not experience pain first thing in the morning after waking which I have read is typical.
I would rather not be on prednisolone as I have also recently discovered I have osteoporosis after suffering 6 spinal compression fractures.
Any similar experience/advice is appreciated.
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Lopera
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Up to 1 in 5 patients with PMR don't have raised markers. I was similar - I had symptoms like yours, standing up and starting to walk was excruciating with groin and foot pain. My markers never went out of normal range - but they were raised for ME, my normal ESR is low single figures. It rumbled along at 16-18 at a point I could barely move during a flare. I had symptoms for 5 years until I found something that sounded like me in a GP blog. My GP still wouldn't try pred but a rheumy did give me 6 weeks worth because I was going to the USA on a business trip and he thought it would help while he decided what it was. I took 15mg at about 10.15am, went home and worked at the computer. At about 4pm I got up, walked downstairs, made a cup of tea and carried it back up. I hadn't been able to do that for years. I took the 6 weeks of pred, 15/10/5mg and the day I missed the first 5mg dose, I was in bed in tears, in worse pain that before the pred. The dramatic response to pred and return of symptoms in a similar time scale without it is usually taken as typical of PMR.
The rheumy wasn't interested - he wanted it to be an inflammatory arthritis and me to take a DMARD but I was about to move here to Italy and hadn't got a specialist to supervise its use. A different GP in the practice was happy enough it was PMR and provided pred for me. SInce then I have ended up under a rheumy who is world-renowned in the PMR/GCA field and HE is happy enough that it was PMR since nothing else has appeared in the 16 years since I started pred. There are several versions of PMR, some have raised markers, some last a lot longer than others. There is no single type of presentation - and no single way to manage it, you have to do different things for different patients.
In your place, I would "interview" other GPs - if I had done that I'd have been diagnosed far sooner and might not have ended up as one of the small percentage who have it for life. As a last resort, if you can afford it, we can recommend a rheumy in Chertsey who is well aware of the vagaried of PMR. There are quite a few who are enlightened - but few of them do private work.
And PS - I have a single spinal compression fracture, bone density is normal, but still very much on pred. I have started bisphosphonate infusions. tangocharlie also has several spinal fractures, also still on pred and she has started romosozumab (I think) as a special case. Neither she nor I could function without pred.
Thank you for your reply. My esr is 20 and noted as satisfactory. I believe I have had this for years. Every time I have complained about hip pain to a Dr they have looked at the range of hip movement I have which is fine but after a couple of xrays which show normal wear and tear it's basically been ignored. Can I ask what dose you are on. I started on 15mg daily and have reduced to 12.5mg for the last 4 weeks. I guess I'm supposed to reduce until I find the point where the pain returns. Thanks for the link and I will bear in mind the rheumy in Chertsey.
Yes, 20 is "within the normal range" but what they fail to grasp is that the normal range is the range that includes 95% of a very large healthy population and it runs from about 3 to 20. That isn't the range that is OK for a single person, each has their own level. And 5% of the normal healthy population fall outside it anyway.
I started on 15mg and responded in 6 hours - but that hasn't meant I have had a simple journey and I'm really not typical of maybe 85% of patients with PMR. I am on 7mg pred now - but only because I am on a biologic to help manage the inflammation.
Yes, the idea is you taper SLOWLY until you get to a dose where the symptoms start to return and then you go back to the previous dose where you were good. That may not be your final place - the disease activity does tend to fall further over time and you do get lower and eventually off pred altogether but how long that may take can't be forecast. It might be a year, it might be 5. Unfortunately, when it isn't diagnosed and managed for a long time, there is a tendency for it to last longer - it is thought that the immune system "learns" its bad behaviour and gets stuck in its ways.
Oh dear - another rheumy department that hasn't read the various studies that state the fact that up to 20% of patients with PMR don't have raised markers.
Unfortunately if you have PMR, then steroids really are the only meds that will keep the inflammation at bay.
Did your doctor also prescribe meds to help bones? I see you are on Bone Health forum - but have you contacted the ROS and spoken to their helpline re all the options open to you?
I have been referred to the osteoporosis clinic but still waiting for an appointment. I am supplementing with calcium, Vit D3, K2 and magnesium and keeping my fingers crossed.
Years before my diagnosis of my PMR I suffered with hip pain and x-ray showed some osteoarthritis which was treated with a local injection of artificial synovial fluid. That allowed me to continue to ride my horse and the pleasure of doing that made me ignore the pain. The pain of PMR crept up more slowly and my GP tried one pain relieving drug after another without success. It was seven months before he suggested testing for raised blood markers and they were conclusive. I was so relieved to get relief from prednisolone, I didn’t really care that my GP prescribed a starting dose of 50 mg. He clearly didn’t know much about it any more than I did.
Correct diagnosis continues to be a bit trial and error and the treatment of PMR continues to be very varied apart from the one and only certain which is that prednisolone is effective in managing it. But it brings with it a whole bunch of other issues so you have to be proactive in managing your PMR, with or without the full understanding of your GP and some less informed rheumatologists.
Hi Lopera, it’s possible that the osteoporosis is the pain you are feeling rather than PMR. But that’s your doctor’s call. With PMR are you sore around your shoulders to touch , does it hurt for you to run your fingers down the sides of your legs with mild pressure ? Do your hands hurt and do you feel crippled up without the pred . Pred will control pain with other things that are inflammatory, it’s a magic control of inflammation and we take it because it’s such a relief to be pain free. I would try to talk to your doctor about some other medication for pain with your osteoporosis rather than pred because it will make it worse over time . It also causes eye problems and other issues . It’s a magic drug but is not nice with other things it causes . I urge to talk to your doctor.
With my own experience with pred it’s been a hard ride of ups and downs . I’m about to be pred free for the first time again ..
I have PMR and Lipoedema both are painful diseases . My PMR started years ago and I could no longer stand the pain I was in about 6 years ago , I haven’t actually been of pred for a long time ever since. The doctor increases the dose when I have pneumonia and then it’s weeks / months to reduce it again . I’ve have a complicated medical history . I’m not advocating you come off pred quickly please don’t do that , but, I would definitely recommend you go to the doctor and see what else it could be if they are questioning PMR and they need to help you find some answers and pain management.
It’s probably not a lot of help , but this condition is not easy to live with. We are each individually different and find ways of coping with pain. I’m trying supplements and other pain management techniques. No change just yet.
Osteoporosis can cause bone pain as the weight bearing becomes more difficult. My mum had PMR and osteoporosis and she had pain due to the weight bearing as time went on . They told her back pain and muscle pain and bone pain was to do with osteoporosis . It was deep pain not the PMR surface pain we get and she got . I could not cuddle my mum she hurt so much … my mum had PMR for 30 years of her life and ended up with the migraine version, I’ve forgotten the name right now ..
The bone pain is due to development of fractures - including compression fractures where the bone collapses on itself. So what I said was quite correct.
Thank you for your reply. Bizarrely my hip bone density is fine. It's just my spine that is buxxxxxd! To be honest I would rather have broken a hip than have the compression fractures. I'm still coming to terms with the loss of almost 6 inches and everything else which comes with kyphosis.
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