Polymyalgia rheumatica: diagnosis, treatment & recovery

At 54, university lecturer Kate Gilbert prided herself on being healthier and fitter than she had been in her twenties. ‘I was jetting around Europe, running half marathons, going on mountain-biking holidays and generally enjoying life to the full. Then one morning I hauled myself out of bed and crashed into the bedroom wall. My whole body was so stiff it was as though somebody had stitched my muscles together and left the pins in. There was a deep pain around both my shoulders and hips. I also had a dull headache that I realised I’d been ignoring for months.’

As Kate lay immobile, she remembered her mother having suffered a similar bout of symptoms in her sixties, which had eventually been diagnosed as a deeply debilitating inflammatory condition, polymyalgia rheumatica (PMR). Her hunch proved correct and after six weeks Kate was diagnosed with PMR. ‘I was luckier than most people because at least I had some idea about what might be wrong with me, but it still took ages to get a diagnosis.’

How does inflammation affect the body?

Who gets Polymyalgia Rheumatica?

PMR strikes the over-50s exclusively and, according to US research, will affect one in 42 women and one in 59 men at some time in their life. Yet despite being so common, few of us have heard of it and even many doctors are unaware of the signs.

This could change with the recent publication of official diagnostic guidelines and classification criteria. However, as Newcastle-under-Lyme GP Dr Toby Helliwell, who has been researching how well the condition is diagnosed in general practice, explains, ‘Most GPs see just four or five cases a year, so the diagnosis doesn’t always spring to mind. And as symptoms vary it’s easily confused with other conditions and often attributed to the general aches and pains that come with age.’

Symptoms of Polymyalgia Rheumatica

• pain and stiffness in the neck, shoulders, hips, upper arms and thighs, which are especially severe after sitting or lying still.
• fatigue 
• weight loss 
• a slight temperature 
• night sweats 
• feeling unwell

Aching joints - what's the cause? 

Tracking the trigger for Polymyalgia Rheumatica

The cause of PMR is unknown but seems to involve an over-zealous immune reaction that, it is thought, causes vasculitis, inflammation of the blood vessels. One in 20 people being treated for PMR – and one in seven who is untreated – for example, develops a potentially serious type of vasculitis, giant cell arteritis (GCA) – see ‘What you need to know’ (below). Scientists have found links between PMR and genes regulating immunity. And the condition is more common in women because their risk of auto-immune conditions tends to be higher than men’s.

‘Some suggest that PMR may be triggered by a common or garden infection,’ says Dr Bhaskar Dasgupta, a leading international expert and consultant rheumatologist at Southend University Hospital, who has pioneered the new guidelines and classification criteria. Peaks in incidence have coincided with epidemics of several infections that cause fluey, cold-like symptoms.

It has also, according to a recent paper in the medical journal The Lancet, been linked with disruption of the hypothalamic-pituitary-gonadal axis, the chemical circuit that links the brain and reproductive organs, and with a shortage of ‘fight or flight’ hormones, such as cortisol, produced under stress.

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Diagnosis and treatment of Polymyalgia Rheumatica

‘Whatever the cause, it’s important to get a proper diagnosis to rule out other medical problems and to get you started on treatment,’ says Dr Sarah Mackie, a rheumatologist from the National Institute of Health Research (NIHR) Musculoskeletal Biomedical Research Unit in Leeds, who is researching PMR.

As yet there are no definitive tests, although your blood will be tested for inflammatory chemicals and you may also have ultrasounds of the shoulders and hips, and positron emission tomography (PET), a three-dimensional scan that can show inflammation of the larger arteries. ‘This can help to avoid over-diagnosis, which can be as problematic as under-diagnosis,’ observes Dr Dasgupta.

Treatment involves taking corticosteroids, hormones produced by your adrenal glands rather than the body-building steroids that have such a bad press. You will usually have to stay on these for at least a year. Most sufferers feel better quickly – within two or three days – and indeed if you don’t, it’s usually a sign that PMR is not the source of your problem.

You may be monitored with blood tests to check for inflammation. And because long-term steroids can cause unwelcome side effects – including weight gain, brittle bones, stomach ulcers and high blood pressure – the doctor will usually try to reduce your dose to the lowest possible to keep you healthy. It can be tricky to get the balance right – if the drugs are reduced too quickly, symptoms can return. You may also be prescribed vitamin D and calcium to help ward off bone problems.

Road to recovery from Polymyalgia Rheumatica

Self-help measures include spending time in the sun without a sunscreen for 15 minutes a day to keep up vitamin D levels, and eating a calcium-rich diet – cheese, yogurt, sesame seeds, broccoli and sardines are all good choices – to protect your bones. Staying active is important, and exercises that use body weight, such as yoga, can help to keep muscles and bones strong. Physiotherapy can ease stiffness and increase flexibility.

Kate Gilbert, now 61, recalls that her symptoms improved dramatically within hours of beginning treatment, although it was three years before she fully recovered. She subsequently set up the self-help organisation Polymyalgia Rheumatica and Giant Cell Arteritis UK www.pmrgca.co.uk to help fill the information gap. Meanwhile, the search is on for new and alternative drugs, and a more specific marker that could be used in a diagnostic blood test.

The good news is that PMR usually strikes only once in a lifetime and most people regain their get-up-and-go within 18 months to two years.

What you need to know about Polymyalgia Rheumatica

• PMR affects the over-50s almost exclusively.
• Symptoms, which often strike suddenly, include pain and stiffness in the neck, shoulders, hips, upper arms and thighs, which are especially severe after sitting or lying still.
• Other clues are fatigue, weight loss, a slight temperature, night sweats and feeling unwell.
• Giant cell arteritis (GCA) is a rare condition linked to PMR, caused by inflammation of medium and large arteries, usually in the head and neck.
• If you experience symptoms that include persistent severe headache, sore scalp, sudden loss of vision or other visual problems, weakness, numbness or deafness, seek medical help immediately. Without treatment GCA can result in blocked arteries leading to the eyes and to blindness.

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