I have been reading your forum since I was diagnosed with PMR just over 2 years ago. I have found it incredibly informative, helpful and comforting, but this is my 1st post. I was diagnosed with PMR after a couple of months of extreme pain and stiffness in the neck, shoulders hips and knee, to the extent that the simplest everyday movements were difficult and painful. This was essentially a self- diagnosis, confirmed by blood tests showing raised inflammation levels. I was prescribed Prednisolone (starting at 15mg, reducing to 12.5, 10 etc). The steroids gave almost immediate relief. Over time and on doctor’s advice I have reduced to almost zero dosage. Regular blood tests (every 3 months or so) have been normal, apart from raised levels last June, when I upped the dose to 5mg. However for the past few months I have had increasing pain and stiffness in my neck and shoulders and more recently my right hip and knee. Turning my head is quite painful and I feel that I am moving like someone 20 years older. I am concerned that this could be a return/ relapse of PMR.
In October (2023) I finally got to see a rheumatologist, had more blood tests and x rays. This showed that bloods and inflammatory markers were normal, but bilateral AC joint arthritis in the shoulders and cervical spine. The advice was to manage ‘conservatively with painkillers and physio’ as the symptoms appeared more osteoarthritic than PMR. It is the case that the only thing which seems to ease the pain is Naproxen, which I take for 4 -5 days with a break until I can’t bear the discomfort any longer. I’m not happy to take NSAIDs long term and I am now thinking of acupuncture and massage. I do 30 mins of stretching and yoga type exercises every morning as well as those advised by the physio, though this can be hard with the stiffness.
My concern is whether it is just OA, which perhaps the steroids were masking or residual PMR or both. Certainly when my initial PMR symptoms started Naproxen did nothing (I understand that pain killers are ineffective with PMR). However, there seems to be a link between my steroid tapering and increased pain and stiffness. My acupuncturist has suggested a DEXA scan as my bones may have weakened and this may be making the OA worse (?). A DEXA scan a year ago was fine.
Any thoughts please?
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Reneestpierre
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Hi and welcome now you have emerged from the wordwork!
I think your doctors do have to consider this might not be either/or but both. Did the return of pain start at a higher dose? When did you last feel good?
I would be inclined to ask to try a short time at a higher dose and see if it works well again. If pred alone works - great, and then try lower doses to find where works and where doesn't. If you can manage some of the pain at least with low dose pred you would need less Naproxen. I really don't understand why they are happy to dole out Naproxen ad nauseum but panic about a low dose of pred. I know they think pred is evil and dangerous - hasn't killed me yet after 14 years but I'm darn sure I wouldn't want to take Naproxen for that long.
Thanks for the swift response. I have upped the dose to 5 mg a couple of times, but I don't think it made a lot of difference. Can't really remember when I felt OK, but maybe at 7mg.
Then try 7! I'd far rather take pred - and funnily enough, I have another pain problem which is a bit better with more pred. They never complain about my PRED dose but have a hissy fit at the idea of taking NSAIDs because of the effects on the cardiovascular system!
Hi, however many times doctors repeat 2 years for the duration of PMR, it still doesn’t make it a fact. You would be amazingly lucky to be free of PMR in 2 years. My guess is a relapse of PMR and you require a resumption of treatment with Pred.
I have had PMR which morphed into GCA/ Large Vessel Vasculitis for 8 years now. I am unusually unlucky I think. I also have cervical Spondylosis- moderate and OA in various places, due to age, excessive screen use in my profession and general wear and tear. To me the pain and stiffness feels different. The give- away in your description is moving like someone 20 years older. That is a perfect description of the impact of PMR. I would rather treat PMR with ever decreasing ( slowly for the support of Adrenals) than be on NSAIs indefinitely. You need another medical opinion in my view.
Thank you, that's really helpful. I feel the PMR may still be there as well as OA, which I had way before PMR (heavy gardening, 3 kids etc). I hate taking steroids, but may be preferable to Naproxen. I will discuss steroid resumption with the doctor, when I manage to get an appointment.
I do find that arthritis pain is actually different to PMR pain, in my case anyway. The fact you are taking so much Naproxen may mean that your main pain may be PMR rather than arthritis. Normal rule of thumb is to increase by 5mg for a short time to really knock the PMR on the head.
If your Dexascan was OK a year ago I would not have thought you would suddenly have osteoporosis now. In my area we can only have Dexascans every three years.
See PMR Pro & DL’s comments…I have fibromyalgia, PMR & osteoarthritis (& another medical issues, too). My Dr thinks I have inflammatory arthritis, too, but in a queue for a year to see a rheumatologist.
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New here, need some advice please, has pmr returned and what should i do?
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