Polymyalgia rheumatica: symptoms, treatment and how long it lasts

The NHS says the most common symptom is pain and stiffness in the shoulders, neck and hips, which develops quickly over a few days or weeks. Both sides of the body are usually affected. The stiffness is often worse first thing in the morning and usually starts to improve after about 45 minutes as you become more active.

Some people also feel very tired, lose their appetite, lose weight or have depression. NICE CKS adds that low-grade fever can be among the more general symptoms, and says PMR should be suspected in a person over 50 with pain in both shoulders or the pelvic girdle lasting more than 2 weeks, with morning stiffness of more than 45 minutes.

The NHS advises seeing a GP if you have pain and stiffness that lasts longer than a week, so that the cause can be investigated.

• Pain and stiffness in the shoulders, neck and hips, usually on both sides.

• Morning stiffness lasting longer than 45 minutes.

• Extreme tiredness, loss of appetite, weight loss or low mood.

• Symptoms that came on over days or a few weeks.

NICE Clinical Knowledge Summaries (CKS) describe PMR as a chronic, systemic, rheumatic inflammatory disease characterised by pain and morning stiffness in the neck, shoulder and pelvic girdle. It is among the most common inflammatory rheumatic diseases in older people, and CKS says it is one of the most common reasons for long-term corticosteroid treatment in the UK.

The NHS notes that diagnosing it can be difficult because the symptoms are similar to those of many other conditions, including rheumatoid arthritis, which need to be ruled out first.

The NHS says steroid medicine is the main treatment, usually a steroid called prednisolone taken as tablets once a day. It does not cure PMR, but it helps relieve the symptoms by blocking the effects of chemicals that cause inflammation. You are likely to start on a moderate dose, and the dose is usually reduced gradually every 1 to 2 months if you are responding well and symptoms are controlled.

NICE CKS says the response is usually rapid and dramatic, with many symptoms resolving after a few days. It lists the key parts of management as gradually reducing the dose when symptoms are fully controlled, watching for relapse, giant cell arteritis and steroid side effects, and assessing and managing the risk of osteoporosis.

The NHS says not to stop steroid tablets suddenly unless your doctor tells you it is safe, because stopping suddenly can make you very unwell.

The NHS says the cause is unknown, but a combination of genetic and environmental factors is thought to be responsible. It is an age-related condition: most people diagnosed are over 65, it is very rare in people younger than 50, and it is more common in women than men.

NICE CKS lists the same age and sex pattern, adds Northern European ancestry as a risk factor, and notes that cycles and peaks in incidence have been seen alongside certain infections. That is an observation about when new cases appear, not evidence that PMR itself is infectious.

The NHS says symptoms should improve within a few days of starting treatment, but you will probably need to continue taking a low dose of prednisolone for about 2 years. Elsewhere it says most people need a course of steroid treatment lasting 12 months to 2 years to stop symptoms returning. PMR often improves on its own after this time, though there is a chance it will return after treatment stops, which is called a relapse.

NICE CKS describes the outlook as variable. It says treatment for 1 to 2 years is often required, some people need low-dose corticosteroids for several years, and relapse is common but generally responds to restarting or increasing the dose. It suggests referral to a rheumatologist if the dose cannot be reduced without relapse or if corticosteroids are needed for more than 2 years.

The NHS says there is no specific test for PMR, but a series of blood tests is likely. Erythrocyte sedimentation rate (ESR) and C-reactive protein (CRP) check the level of inflammation in the body. If both are normal, PMR is unlikely to be diagnosed, but high levels do not automatically mean PMR because inflammation is a feature of many conditions.

Further tests may rule out other conditions. For example, rheumatoid factor and anti-CCP antibodies can help rule out rheumatoid arthritis, and blood tests can check for infection, kidney function and thyroid problems that cause muscle pain. X-rays and ultrasound scans may be used to look at the bones and joints.

NICE CKS says a working diagnosis is made from the core features, exclusion of other diagnoses such as rheumatoid arthritis and fibromyalgia, a positive response to oral corticosteroids within a week and normalisation of inflammatory markers within 4 weeks. The NHS says PMR can usually be confidently diagnosed if all of the following apply.

• You are over 50 years of age.

• You have pain in your shoulders or hips.

• You have morning stiffness that lasts longer than 45 minutes.

• Your symptoms have lasted for more than 2 weeks.

• Blood tests show raised levels of inflammation.

• Your symptoms rapidly improve after treatment with steroids.

Temporal arteritis, also called giant cell arteritis (GCA), is a separate and more serious condition in which arteries, particularly those at the temples, become inflamed. The NHS says up to 1 in 5 people with PMR develop it, and some people with temporal arteritis also develop PMR. NICE CKS notes it may occur abruptly and without warning early in the course of PMR.

The NHS says to contact a GP or NHS 111 immediately if you have been diagnosed with PMR (or it is suspected) and have a new or frequent headache that usually develops suddenly, a sore or tender scalp, pain in the jaw muscles or tongue when eating or talking, or problems with sight such as double vision or loss of vision in one or both eyes.

The NHS says temporal arteritis can lead to serious problems like stroke or blindness if not treated quickly, and that treatment with steroids is started before the diagnosis is confirmed because of the risk of vision loss. If you have problems with your vision, it says you should have a same-day appointment with an eye specialist at a hospital eye department.

The NHS lists increased appetite and weight gain, high blood pressure, weakening of the bones (osteoporosis), stomach ulcers and a higher risk of infection among the side effects of prednisolone. It says the risk of these should improve as the dose is reduced.

It also says about 1 in 20 people have changes in their mental state on prednisolone, such as feeling depressed, anxious, confused or aggressive, and that you should contact a GP as soon as possible if this happens. If you have thoughts about harming yourself or ending your life, the NHS says to call 999 or go to A&E.

The NHS adds that you should get immediate medical advice if you think you have been exposed to the chickenpox or shingles virus, or someone in your household develops chickenpox or shingles.

See a GP if pain and stiffness around the shoulders, neck or hips lasts longer than a week. Contact a GP or call NHS 111 immediately if you have a new headache, scalp tenderness, jaw or tongue pain when eating or talking, or any change in your sight, particularly if you have PMR or it is suspected.

Call 999 or go to A&E if you have thoughts about harming yourself or ending your life while taking steroids. Seek advice early if symptoms return while your dose is being reduced, because the NHS says your dose may need to be adjusted.

PMR is usually diagnosed and followed up through the GP, with blood tests. NICE CKS recommends referral to a rheumatologist if there is doubt about the diagnosis, for example atypical features or a poor response to corticosteroids, if the steroid dose cannot be reduced at reasonable intervals without relapse, or if steroids are needed for more than 2 years.

Some people choose to see a rheumatologist privately for assessment or a second opinion. Ask how follow-up, blood monitoring and the steroid reduction plan will be shared with your GP so that one team stays responsible for the overall plan.