What is pulmonary sarcoidosis and how is it diagnosed?

Sarcoidosis is a condition where cells in your body join to make tiny lumps of inflamed tissue. These are called granulomas.

When you have lots of granulomas in one area of your body, the inflammation can affect how well that part of your body works. 

Granulomas can happen anywhere in your body. They are most often found in the lungs, skin and lymph nodes (glands). They’re not always harmful.

Over time, inflammation that does not go away can lead to lasting damage such as scarring of the lungs (fibrosis). Around 1 in 4 people with sarcoidosis develop scarring in the lungs (pulmonary fibrosis) or elsewhere in the body.

Sarcoidosis is not always a lung condition, but the lungs are affected in around 9 in 10 people. This is called pulmonary sarcoidosis.

Pulmonary sarcoidosis is a type of interstitial lung disease (ILD). This means that it damages the tissue in your lungs. 

Symptoms of pulmonary sarcoidosis include:

• breathlessness, especially after exercise or movement
• a cough that does not go away - most people have a dry cough that does not bring up any mucus (phlegm)
• noisy chest sounds, like wheezing
• feeling very tired (fatigue) - around 8 in 10 people with sarcoidosis have fatigue.

Some people never have symptoms and only find out they have pulmonary sarcoidosis when they have a chest X-ray for another reason.

Symptoms of sarcoidosis in other parts of your body

You may have sarcoidosis in more than one part of your body. Your symptoms can vary depending on which part of your body is affected. 

They may include:

• weight loss for no clear reason
• chest pain
• a high temperature of 38 degrees Celsius or above (fever). The NHS has more information about fever in adults and fever in children.
• night sweats
• painful joints, bones or muscles
• skin rashes
• swollen glands in your face, neck, armpit or groin.

Researchers are unsure what causes pulmonary sarcoidosis. It's thought to be linked to your body’s defence system (immune system). 

Sarcoidosis may happen when the immune system overreacts to an infection or something you breathe in from your environment. This can lead to inflammation in your lungs.

Pulmonary sarcoidosis is not infectious and cannot be passed from person to person.

Sarcoidosis is uncommon in adults and very rare in children. It affects around 1 in every 10,000 adults and 1 in 100,000 children.

Your risk of pulmonary sarcoidosis may be higher if you:

• are aged between 20 and 50 years old, but it can develop at any age
• are female or were assigned female at birth, but sarcoidosis can affect people of any sex
• live or work around certain substances like mould, soil, insecticides and silica - you may be around these substances more if you're a farmer or work in construction
• have a family history of sarcoidosis - around 1 in 10 people with sarcoidosis also have someone else in their family with the condition
• have an identical twin with sarcoidosis
• are African-American, African-Caribbean or Scandinavian. 

Pulmonary sarcoidosis can be difficult to diagnose because its symptoms are the same as a lot of other conditions. Some people do not have any obvious symptoms. 

At your first appointment, your GP will ask you about your symptoms, work and medical history.

If they think your lungs could be affected, they’ll refer you to a specialist for some tests to help diagnose and rule out other conditions. The exact tests you’ll have are different for everyone. 

Tests you might have include:

Your appointment letter will tell you everything you need to do to prepare for your tests.

Endobronchial ultrasound bronchoscopy (EBUS)

Sometimes you may have an endobronchial ultrasound (EBUS) to look inside your lungs. 

You might have this test after an X-ray or CT scan if they show something that needs checking.

This test uses a special kind of thin, flexible tube (bronchoscope) with an ultrasound on the end to look inside your lungs. It can check areas that a traditional bronchoscope cannot reach. 

An EBUS ultrasound is more likely to give a clear diagnosis than a standard bronchoscopy.

Pulmonary sarcoidosis affects everyone differently. 

Many people with sarcoidosis fully recover within two to five years without any treatment. Symptoms can start suddenly, but they do not get worse. 

For other people, symptoms can develop slowly and gradually get worse over many years. This is called chronic sarcoidosis. Treatments for sarcoidosis can help you manage your symptoms, but there’s currently no cure. 

Sarcoidosis UK is a charity dedicated to supporting people with sarcoidosis. They have more information to help you live well with sarcoidosis.