Polymyalgia rheumatica

What is polymyalgia rheumatica and whom does it affect?

Polymyalgia rheumatica (PMR) is a condition which causes inflammation of large muscles. 'Poly' means many and 'myalgia' means muscle pain. The cause of PMR is not known.

PMR mainly affects people over the age of 65. It is rare in people aged under 50. About 1 in 1,000 people over the age of 50 develop PMR each year. Women are three times more likely to be affected than men.

What are the symptoms of polymyalgia rheumatica?

The most common symptoms

• Stiffness, pain, aching and tenderness of the large muscles around the shoulders and upper arms. The muscles around the neck and hips may also be affected.

• The stiffness may be so bad that you may have difficulty turning over in bed, rising from a bed or a chair, or raising your arms above shoulder height (for example, to comb your hair).

• The stiffness is usually worst first thing in the morning. Getting out of bed may be difficult. The stiffness often eases after an hour or so after getting up from bed and as the day goes on.

Inflammation and swelling sometimes occur in other soft tissues of the body. For example, tendons may become inflamed (tenosynovitis), your hands or feet may become slightly swollen and some joints may become slightly swollen.

Other general symptoms may also occasionally occur. These include tiredness, depression, night sweats, high temperature (fever), loss of appetite, and weight loss.

Symptoms typically develop over a few days or weeks. However, they develop more slowly in some cases. You may pass it off as aches and pains of getting older when symptoms first start.

Do I need any tests?

Symptoms of PMR are sometimes similar to other conditions such as frozen shoulder, arthritis, or other muscle diseases. So, a blood test is usually done to help make the correct diagnosis.

No blood test is 100% reliable for PMR. However, blood tests called the erythrocyte sedimentation rate (ESR) test and the C-reactive protein (CRP) test can detect if there is inflammation in your body from various diseases. If either of these blood tests shows a high level of inflammation and you have the typical symptoms, this usually confirms the diagnosis of PMR.

A series of blood tests is usually done to rule out other causes for your symptoms. If doubt remains about the diagnosis then you may be advised to have various other tests. Occasionally an ultrasound scan of the shoulders and/or hips may be useful in some cases to help distinguish PMR from other conditions. This is not a routine test for PMR but may be used if the diagnosis is not clear.

What is the treatment for polymyalgia rheumatica?

A steroid medicine such as prednisolone is the usual treatment. Steroids work by reducing swelling (inflammation). Treatment usually works quickly, within a few days. After starting treatment, the improvement in symptoms over 2-3 days is often quite dramatic. In fact, if symptoms do not greatly ease and go within a week or so of treatment then the diagnosis of PMR may not be correct. Tell your doctor if symptoms do not go with steroids, as the symptoms may be due to another disease.

Treatment is usually started with a medium dose - usually about 15 mg per day. This is then reduced gradually to a lower maintenance dose. It may take several months to reduce the dose gradually. The maintenance dose needed to keep symptoms away varies from person to person. Usually it is between 2.5 and 5 mg per day.

You are likely to need treatment for at least one or two years. In some people the condition goes away, so the steroids can be stopped after this time. However, many people need treatment for several years, sometimes for life. If you stop taking the steroid tablets too soon, the symptoms return.

Some people are able to stop treatment after 2-3 years but symptoms sometimes return at a later time (a relapse). If this occurs, the treatment with steroids can be restarted and will usually work well again.

Some points about steroid tablets

• Do not stop taking steroid tablets suddenly. Once your body is used to steroids, if you stop the tablets suddenly, you may develop serious withdrawal effects within a few days. They are always stopped by gradually lowering the dose - your doctor will advise.

• Do not take anti-inflammatory painkillers whilst you take steroids unless advised by a doctor. The two together increase your risk of developing a stomach ulcer.

• Most people who take regular steroids carry a steroid card. This gives details of your dose, condition, etc, in case of emergencies.

• If you are ill with other conditions, or have surgery, the dose of steroid may need to be increased for a short time. This is because you need more steroid during physical stress.

Side-effects

The risk of developing side-effects from steroids is increased with higher doses. This is why the dose used is the lowest that keeps symptoms away. If possible, a maintenance dose below 7-10 mg per day is best. Most people with PMR need less than 10 mg per day to keep symptoms away. Possible side-effects from steroids include the following:

'Thinning' of the bones (osteoporosis) - but you can take a medicine to help protect against this if you are at increased risk. For example, if you are aged 65 or older, or have a history of fractures, you should take a medicine to help protect against osteoporosis. Your doctor will advise. If you are aged below 65 and do not have a history of fractures you may be offered a special scan which measures bone density (a DXA scan). If your bone density is below a certain level you may be offered a medicine to protect against osteoporosis.

Increased chance of infections - in particular, a severe form of chickenpox and measles. Note: most people have had chickenpox in the past and are immune to it. Also, most people have either had measles or have been immunised against it and are immune. But, if you have not had chickenpox or measles (or measles immunisation), keep away from people with measles, chickenpox, or shingles (which is caused by the same germ (virus) as chickenpox). Tell a doctor if you come into contact with anyone with these conditions if you are unsure about your medical past history.

Changes in mood and behaviour - some people actually feel better in themselves when they take steroids. However, steroids may aggravate depression and other mental health problems and they may occasionally cause mental health problems. If this side-effect occurs, it tends to happen within a few weeks of starting treatment and is more likely with higher doses. Some people even become confused, and irritable; they may even develop delusions and suicidal thoughts. These mental health effects can also occur when steroid treatment is being withdrawn. Seek medical advice if worrying mood or behavioural changes occur.

Other possible side-effects
These include:

• Weight gain.

• Increase in blood pressure. So have your blood pressure checked regularly. It can be treated if it becomes high.

• High blood sugar (glucose) which may mean extra treatment if you have diabetes. Steroids may occasionally cause diabetes to develop. If you take long-term steroids, your doctor may arrange a yearly blood sugar test to check for diabetes. This may be important if you have a family history of diabetes.

• Skin problems such as poor healing after injuries, thinning skin, and easy bruising. Stretchmarks sometimes develop.

• Muscle weakness.

• An increased risk of developing clouding of the lenses of the eyes (cataracts).

• An increased risk of duodenal and stomach ulcers. Tell your doctor if you develop indigestion or tummy (abdominal) pains.

Although the above points have to be mentioned, do not be put off about steroids. Most people with PMR feel so much better after starting steroid tablets. The relief of symptoms usually outweighs the risk of side-effects from the doses of steroids used for this condition. Your doctor will review you regularly to keep an eye out for any side-effects and to check you are on the lowest and safest possible dose.

Are there any complications with polymyalgia rheumatica?

Between 1 and 2 in every 10 people with PMR also develop a related condition called giant cell arteritis (GCA) (also known as temporal arteritis). This may be at the same time or some time earlier or later than when PMR develops. GCA can be much more serious than PMR.

GCA causes swelling (inflammation) of blood vessels (arteries). The arteries most commonly affected are those which pass over the temples - that is, the sides of the forehead next to the eyes. The eye can be affected in some cases. This can lead to serious eye problems, even total loss of vision. Rarely, other arteries such as those going to the brain are affected.

If you develop GCA, you should start treatment as soon as possible after symptoms develop. It is treated with a much higher dose of steroids than PMR. So you can still develop GCA even if you are being treated for PMR.

So, tell a doctor immediately if you have PMR and you develop any of the following symptoms:

• Headache or tenderness on one side of your head.

• Pain in your jaw when you chew which eases quickly when you rest the jaw muscles.

• Sudden loss of vision, or any other sudden visual problem in one or both eyes.

• Weakness, numbness, deafness or any other nerve-related symptom.

See the separate leaflet called Giant Cell Arteritis for more details.