Polymyositis and dermatomyositis

Myositis means inflammation in the muscles, which causes pain and/or weakness in the affected muscles. Polymyositis and dermatomyositis are autoimmune diseases. This means the immune system attacks the body's own tissues.

Polymyositis and dermatomyositis are rare diseases, affecting only 6–8 people out of every 100,000. They usually affect adults, though there is a type of dermatomyositis that affects children called juvenile dermatomyositis.

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Polymyositis and dermatomyositis symptoms

Polymyositis causes pain and/or weakness in many muscles, particularly the larger muscles of the shoulders, hips and thighs. Inflamed muscles may be tender to the touch, and you may feel generally unwell and experience weight loss or night sweats. In a few cases it can also affect breathing and swallowing.

Dermatomyositis has similar symptoms but the inflammation also causes a red/pink rash on the upper eyelids, face, neck and the backs of the hands and fingers.

Symptoms range from mild pain and stiffness through to severe weakness. If the symptoms appear very suddenly, and especially if they are accompanied by breathing or swallowing difficulties, then you may be admitted urgently into hospital until the condition has been stabilized.

Other types of myositis

  • Post-infectious reactive myositis can occur after some viral infections. Inflammation is a normal part of the body's defence against infections, but the body's immune system can sometimes cause inflammation in tissues including the muscles even after the virus has been dealt with. Symptoms are similar to those of polymyositis but are usually mild, and will settle without treatment
  • Inclusion body myositis (IBM) causes muscle weakness in much the same way as polymyositis and dermatomyositis. However, in IBM the weakness usually affects muscles near the ends of the limbs (hands, forearms and calves) and IBM only rarely causes muscle pain.

What are the long-term risks?

In both polymyositis and dermatomyositis inflammation of the lung tissues can occasionally lead to lung scarring and long-term breathlessness.

Rarely myositis can be associated with cancer. Most people with polymyositis and dermatomyositis don't develop cancer but your consultant may arrange tests, such as a chest x-ray or an ultrasound scan of your abdomen and pelvis to be on the safe side.

Children with dermatomyositis may develop painful calcium deposits in damaged muscles. These deposits, combined with immobility, can occasionally result in permanently bent joints (flexion contracture).

What causes polymyositis and dermatomyositis?

The processes in the body that cause polymyositis and dermatomyositis aren't well understood. Normally, the body's immune system protects it against infections such as those caused by bacteria and viruses. In polymyositis and dermatomyositis the immune system attacks the body's own tissues, causing inflammation in the muscles and possibly the skin.

What causes the immune system to turn against the muscles, skin and blood vessels is not known. Genetic factors probably play a part but the conditions are not directly inherited.

How are polymyositis and dermatomyositis diagnosed?

Muscle pain and weakness occur in many other conditions. Tests will help your doctor decide whether you have polymyositis or dermatomyositis and to rule out other possible causes of your symptoms.

 You will probably have the following blood tests:

  • Erythrocyte sedimentation rate (ESR) – This detects and measures inflammation, but inflammation occurs in other conditions so a high ESR alone won't confirm polymyositis or dermatomyositis
  • Creatine phosphokinase – This is an enzyme that leaks out of damaged muscles. If you have polymyositis and dermatomyositis you're likely to have a high level of this enzyme in the bloodstream.

These tests alone may not be enough to confirm polymyositis or dermatomyositis. However, they can help to rule out other conditions such as fibromyalgia where creatine phosphokinase and ESR are usually normal.

You'll probably have repeat blood tests once your treatment starts to make sure that it's working.

Sometimes further tests may be needed:

  • Electromyography (EMG) – A thin electrode probe is inserted into the muscle to record electrical discharges from nerve endings which cause our muscles to move. An unusual pattern of electrical activity in a number of different muscles suggests you do have polymyositis or dermatomyositis.
  • Muscle biopsy – A small sample of muscle, usually taken from the thigh, is examined under a microscope. This may show white blood cells sticking to the covering of the muscle and damaging the muscle proteins.

You may need to have a repeat muscle biopsy if your condition doesn't improve with standard treatments. This is to check for inclusion body myositis (IBM). Very powerful microscopes allow doctors to see abnormal clumps of proteins (inclusion bodies) inside the muscle cells – these are not present in other types of mysositis.

Polymyositis and dermatomyositis treatments

Polymyositis and dermatomyositis is treated using a combination of drug therapies including steroid tablets, disease-modifying drugs and infusions of immunoglobulins.

Treatment is usually successful, though a few people do have ongoing weakness.

Steroid tablets in relatively high-doses are usually the first choice, and should reduce the inflammation very quickly. It will take some weeks or months for the body to repair any muscle damage, so don't expect your muscles to be back to full strength straight away. High-dose steroids can have side-effects, including osteoporosis. To minimize this risk, your doctor will reduce the dose as quickly as possible.

If your symptoms flare up when the steroid dose is reduced then your doctor may suggest drugs such as methotrexate or azathioprine, which can reduce inflammation without having to increase your steroid dose again. Methotrexate and azathioprine can also have side-effects but you will have regular blood-monitoring tests as a precaution against these.

Infusions of immunoglobulins are available if tablets alone aren't controlling the disease. Immunoglobulins are antibodies that suppress the immune system's attack on your own body tissues. Infusions are given in hospital at monthly or 3-monthly intervals.

At the start of more severe cases the muscles used for swallowing and breathing may become very weak. People with these conditions may require medical help to eat or breathe.

Even in severe cases myositis usually responds well to treatment, though some people do need ongoing drug treatments to keep the condition under control.

Self-help and daily living

You'll probably feel more tired than usual so you'll need to pace yourself with your daily activities. However, exercises will be an important part of your recovery programme.

Exercise

When your myositis is very active, it's probably best to rest. However, you'll need to start exercises as soon as possible once the condition begins to settle to restore muscle strength and improve your stamina. To start with this should be under the supervision of a physiotherapist.

Children will need more vigorous physiotherapy to avoid flexion contracture where joints, especially the knees, become permanently bent.

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