Sarcoidosis

The exact cause of sarcoidosis is not known. It probably involves a precise combination of genetic and environmental factors. The condition does run in some families. So far, a single factor causing sarcoidosis has not been identified. In many cases, the inflammation resolves by itself. However, sometimes the inflammation progresses and scar tissue or fibrosis occurs.

The lungs are commonly affected as well as the skin and eyes. It can also affect the liver, heart, nervous system and joints.

Symptoms:

When sarcoidosis affects the lungs, you may develop a cough and shortness of breath and other symptoms of pulmonary fibrosis.

The symptoms of sarcoidosis depend on which part of the body is affected.

They can include:

• cough
• feeling breathless
• red or painful eyes
• swollen glands
• skin rashes
• pain in joints, muscles or bones
• numbness or weakness of the face, arms, legs

Patients with sarcoidosis may feel tired and lethargic (fatigued), lose weight or suffer with fevers and night sweats.

Sometimes, the symptoms of sarcoidosis start suddenly and don’t last long. In other patients, the symptoms may develop gradually and last for many years.

Some people don’t have any symptoms at all and are told they have sarcoidosis after having a routine chest X-ray or other investigations.

How is Sarcoidosis Diagnosed?

Sarcoidosis is difficult to diagnose because the symptoms often resemble other diseases. There is no single or specific test to diagnose sarcoidosis.

A detailed history and examination by your doctor is the most important first step in diagnosing sarcoidosis. They will determine which parts of your body may be affected.

Blood tests Your doctor may arrange blood tests to look for signs of inflammation, to check your kidney and liver function, and your calcium levels. They may also check a marker in your blood called angiotensin-converting enzyme (ACE), which is sometimes raised in patients with sarcoidosis.

Lungs If your doctor suspects your lungs may be affected, they will usually arrange a chest X-ray and breathing tests (spirometry).

Scans Your doctor may also arrange imaging scans (CT scan or PET CT scan) to look for other parts of your body that may be affected but might not be causing you any symptoms. The scans will look for inflammation (granulomas).

Biopsy In order to help make a definite diagnosis of sarcoidosis a sample of tissue (a biopsy) is taken from one of the areas of inflammation (granuloma) using a bronchoscopy.

As sarcoidosis can affect many different parts of the body, your doctor may ask other specialists (who specialise in the part of your body affected by sarcoidosis) to look after you as well. SarcoidosisUK has further information on all the different types of sarcoidosis, please use the menu above to find the best information for you.

Treatment:

Some people do not need treatment for sarcoidosis. It gets better by itself in about 60% of people. Others may be offered immunosuppressive therapies to treat the inflammation, particularly if there is progressive  lung disease, heart or neurological involvement.

You may be offered pulmonary rehabilitation. If  the lung and/or heart involvement is severe, you may need oxygen therapy and be assessed for transplantation.

It is advised to give up smoking.

Ongoing treatment:

You will have regular follow-up appointments with your medical team to monitor your sarcoidosis and to discuss whether your treatment needs  to change.

Outlook of sarcoidosis:

There is no cure for pulmonary sarcoidosis, but most people get better after a few years. Some patients find their symptoms continue to get worse, and treatment is required for a long time.

Other forms of pulmonary fibrosis‍:

• Asbestosis‍
• ‍COVID-19-related pulmonary fibrosis‍
• Drug-induced pulmonary fibrosis‍
• ‍Hypersensitivity pneumonitis
• ‍Idiopathic pulmonary fibrosis
• IdiopathicNSIP
• Rheumatoid arthritis-ILD‍
• Systemic sclerosis‍‍

Get support for sarcoidosis

Sarcoidosis UK have a wide range of high quality patient information about sarcoidosis. All the information has been developed with the help of experts and is free to use.