What is sarcoidosis?

Sarcoidosis occurs when inflammatory cells clump together to form granulomas in various parts of the body, including the lungs. About 3000-4000 people are diagnosed each year with sarcoidosis in the UK.

Causes of sarcoidosis

What activates the immune system to form granulomas is unknown. 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 of sarcoidosis

When sarcoidosis affects the lungs, you may develop a cough and shortness of breath and other symptoms of pulmonary fibrosis. As sarcoidosis can affect many parts of the body, you may experience a number of other symptoms such as fatigue, sweats, joint pains, skin rashes, red or painful eyes, swollen glands, palpitations, numbness or weakness of face, arms or legs.

Treatments for sarcoidosis

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 treatments

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

Get support for sarcoidosis

Sarcoidosis UK

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.

Join a support group in your area

It’s important to remember that you are not alone. There are now over 75 pulmonary fibrosis support groups around the country.

Support groups meet informally to share experiences, provide expert information and raise funds and awareness. Find a group near you.

Call our support line

APF runs an email and telephone support line offering information and advice about living with PF. Find out more.

Find us on social media

We have an active and supportive online community ready to welcome you on Facebook, Twitter and Instagram for updates, news and connections to our online community.

Watch videos of how other people cope day to day with PF.

Information provided by Action for Pulmonary Fibrosis (APF) is not a substitute for professional medical advice. It’s intended as general information only. APF is not responsible for any errors or omissions or for any loss or damage suffered by users resulting from the information published on actionpf.org.

Further information for carers:

Your essential caring guide (PDF)
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