The aim of this booklet is to explain what sarcoidosis is, how it is diagnosed and how it is treated

What is sarcoidosis?
What are the symptoms of sarcoidosis?
How is sarcoidosis diagnosed?
How is sarcoidosis treated?
Further information

What is sarcoidosis?

Sarcoidosis is a disease that leads to tiny lumps (called granulomas) developing in and on your body.

There are two different types of sarcoidosis:

1.) Acute sarcoidosis (sometimes called Lofgren’s syndrome) can flare up quickly. It causes:

  • enlarged lymph glands – these are deep inside the chest and can be seen on a chest X-ray
  • large very tender purple lumps on the shins
  • fevers
  • weakness and often joint pains.

In most cases acute sarcoidosis goes away without treatment.

2.) Chronic sarcoidosis causes scarring (fibrosis) of the lungs that gets worse over time. It can also cause very bad skin rashes and can affect other organs including the heart and brain.

Sarcoidosis is most commonly found in the lungs and skin but it can affect most organs including the eyes, heart, brain, liver, spleen, bowels, kidney, nerves, lymph nodes, muscles, nose and sinuses.

We do not know what causes sarcoidosis. Research is ongoing, but it is believed that it may be caused by something in the environment. It affects people whose immune system does not work properly – which is probably because of their genes.

In a small number of cases sarcoidosis affects more than one person in the same family. But there is no evidence that it can pass from one person to another.

Sarcoidosis is a relatively rare disease. On average, one person in every 10,000 gets the disease in the UK. It affects all races and ages but it is most commonly found in people between 20-40 years of age. It is four times more common in people of African descent than Europeans.

Sarcoidosis very rarely affects children.

What are the symptoms of sarcoidosis?

Sarcoidosis can affect almost any organ so there are a large range of possible symptoms. And these may vary from person to person.

A lot of the time sarcoidosis has no symptoms. It is only noticed when you have tests such as chest X-rays for other reasons.

The following pages describe how sarcoidosis can affect different organs. The symptoms you have depend on which of your organs are affected.

General symptoms

  • General tiredness
  • Fatigue – you feel extremely tired physically, mentally or emotionally, all or most of the time
  • Weight loss
  • Fever


  • Cough
  • Breathlessness
  • A pain in the chest – normally an uncomfortable tight feeling in the centre of the chest – but this is rare

Sarcoidosis can affect the skin in many different ways, for example:

  • Large tender purple lumps on your shins (called erythema nodosum) may flare up at the start of sarcoidosis. This is often linked with a temperature and feeling unwell
  • Small bumps (called nodules or papules) on or just under the surface of your skin
  • A purplish raised rash (called lupus pernio) that affects your nose and cheeks

Lymph glands
Lymph glands become swollen. Doctors think that swollen lymph glands are often the first symptom of the disease.


  • Poor vision
  • Sarcoidosis can make the front of your eyes red and painful. It can also make your eyes dry and very sensitive to light.Sarcoidosis can affect your sight severely. If you notice changes to your eyes and vision, it is important to see an eye specialist as soon as possible. Bones and jointsYou can get pain in any joint but sarcoidosis most commonly affects your knees and ankles. This is often associated with erythema nodosum (see above for details). Occasionally sarcoid granulomas (tiny lumps) in bones can be painful.

Your heart can become enlarged and weak. This leads to breathlessness and blocked lungs (cardiomyopathy). Your heartbeat can also slow down or become irregular.

Nervous system and brain
Sarcoidosis in the nervous system only affects a small number of people. The symptoms are: weakness, numbness or pins and needles in the arms, legs and other parts of the body

The brain and its protective coverings (called meninges) can be affected by sarcoid granulomas. This can cause headaches, pins and needles, numb skin and weak muscles.

Occasionally, if they effect the nerve to your face, sarcoid granulomas can cause your face to droop.

Sarcoidosis can affect your kidneys, which means they do not work as well. But there are few symptoms.

Sarcoidosis can raise calcium levels in your blood which can lead to kidney stones and other problems.

Liver and spleen

  • The liver and spleen may become enlarged
  • Anaemia (low red blood cell/oxygen levels in the blood) may result from a very enlarged spleen
  • Blood clotting of a higher or lower level than normal
  • An increased risk of infections – but this is rare.

How is sarcoidosis diagnosed?

There are many ways to diagnose sarcoidosis. This is because it can affect so many different organs.

In most cases, doctors see evidence of the condition on a chest X-ray or CT scan of the lungs. Then they take a tissue sample (biopsy) from the affected organ – such as the lungs, skin or lymph nodes – and examine it under a microscope to confirm the diagnosis.

Doctors take a lung sample by passing a small telescope via the nose, down the windpipe and into the lungs. This is called a bronchoscopy.

Sometimes doctors use these tests to make sure their original diagnosis is right. This is because other diseases, including tuberculosis, can look like sarcoidosis.

Once your doctor is happy with the diagnosis, you may still need further tests. These tests are carried out to see if sarcoidosis is present in other organs and how much it has affected them.

The tests will depend on your symptoms but they often include:

  • Lung function tests – breathing tests which show if, and by how much, sarcoidosis has affected your lungs.
  • Electrocardiograph (ECG) and 24 hour tape – record the electrical activity of the heart over a few seconds or a 24 hour period. They help to give a more detailed picture of how sarcoidosis has affected your heart.
  • Ultrasound scan of the heart (echocardiograph) – to show if the heart is enlarged, or otherwise affected by sarcoidosis.
  • Ultrasound scan of the liver or spleen – to show if the organs have been affected by sarcoidosis.
  • X-rays – lung X-rays are most common. They check the general condition of your lungs. You can also have a more detailed X-ray – called a CT scan – on your lungs, brain and other areas too.
  • Blood tests – they can check if your liver and kidneys are working properly and what your blood calcium and blood cell levels are.

How is sarcoidosis treated?

Acute sarcoidosis goes away without treatment in up to 90 per cent of cases. Painkillers such as paracetamol or ibuprofen are generally the only treatment you need.

Chronic sarcoidosis is more difficult to treat and although it may go away without treatment, this is less likely to happen. Steroids (tablets, creams or eye drops) are generally the most effective treatment.

Steroid treatment for sarcoidosis
You will probably need steroid treatment if:

  • Your symptoms get worse over time
  • The results of your lung function tests get worse
  • You have raised blood calcium
  • Sarcoidosis affects your heart, brain or eyes.

Prednisolone is the most commonly used steroid. You will normally take a moderate to high dose for 6-12 weeks. The dose is then gradually reduced depending on how you respond to treatment.

Treatment usually lasts for between six months and two years. If sarcoidosis goes away after this time, your treatment may be gradually stopped.

Steroids can have side-effects including raised blood pressure, diabetes, osteoporosis (brittle bones), weight gain, bruising, nausea and mood changes.

Non-steroid medication
Non-steroid medication is an option if you take high doses of steroids for a long time or if you develop serious side-effects.

There is little evidence to show non-steroid medication is effective. It does not work for everyone.

However, medication that is usually used against malaria is sometimes helpful for treating skin sarcoidosis.

Occasionally if sarcoidosis is very severe and can only be controlled by large doses of steroids, your doctor may prescribe a small dose of anti-cancer medication (such as methotraxate). This can help reduce the amount of steroids you take and the length of time you take them.

All medications have different side effects and your specialist will discuss them with you in detail if you need them for your condition.

Other treatments
Other treatments include:

  • Oxygen – for the treatment of advanced lung fibrosis due to sarcoidosis
  • Lung transplantation – also used for the treatment of advanced lung fibrosis but only in rare cases
  • Pacemaker for heart failure.

Long-term treatment
If you have active sarcoidosis you will probably be referred to a sarcoidosis or chest specialist.

Depending on how you’ve been affected, you may also be referred to specialists for other organs such as your eyes or heart.

If you have chronic sarcoidosis you may have the illness for months or years. In many people the disease can go away, but scarring of your lungs, skin or other organs may remain. Once your treatment is stopped you may still need to see your specialist to make sure the disease does not come back.

Occasionally, sarcoidosis does not go away, although this is unusual. Very occasionally, sarcoidosis may be fatal. This is usually due to severe lung fibrosis or if your heart has been affected.

Further information

Because sarcoidosis affects different people in different ways, it is best to discuss your disease with your own specialist. Please ask your doctor or nurse if you are unsure about any of the information in this booklet or have further questions.

You can also call the British Lung Foundation helpline on 08458 50 50 20. The helpline is open from 10am to 6pm, Monday to Friday and is staffed by health professionals and benefits advisors.


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