What is sarcoidosis?
Sarcoidosis is a condition where lumps cause granulomas develop in different areas in the body. Granulomas are made up of clusters or cells involved in inflammation. If lots of granulomas form in an organ, they can stop the organ from working properly.
What causes sarcoidosis?
The exact cause of sarcoidosis is not known but it probably involves a mixture of genetic and environmental factors. It can run in some families. So far, a single cause of sarcoidosis has not been found.
What parts of the body can be affected?
- Sarcoidosis can affect many different parts of the body.
- The lungs and lymph glands in the chest are most commonly involved, affecting 9 in 10 patients with sarcoidosis.
- Other parts of the body that are often involved are the skin, eyes, and lymph glands elsewhere in the body.
- Joints, muscles, and bones are involved in 1 in 5 patients.
- The nerves and nervous system are involved in about 1 in 20 patients.
- The heart is involved in about 1 in 50 patients.
What are the symptoms of sarcoidosis?
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, or legs
Patients with sarcoidosis may feel tired and lethargic (fatigued), lose weight, or have 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?
There is no one specific test to diagnose sarcoidosis. The doctors will take a detailed medical history from you and do a physical exam. You may also have the following tests:
- Blood tests – to check your liver and kidney function, and calcium levels. We may also check a marker in your blood called Angiotestin-Converting Enzyme (ACE) - this is sometimes higher in patients with sarcoidosis.
- ECG - a tracing of the electrical activity in your heart.
- Chest X-ray
- Lung function tests – to see how well your lungs work. They can also monitor how your condition is progressing.
- CT scan – this will give us a detailed picture of your lungs. The patterns on these pictures
- helps us work out if the disease is active or quiet.
- PET-CT scan – this scan can look for areas affected by sarcoidosis that might not be causing any symptoms.
- Biopsy – we may wish to remove a small piece of tissue to confirm the diagnosis. Where the biopsy will be depends on the area of your body affected; we will discuss this with you.
Sarcoidosis can affect many different parts of the body, so your doctor may ask other specialists (who specialise in the part of your body affected by sarcoidosis) to look after you as well.
The outlook
Sarcoidosis gets better without treatment in most patients (around 60%). In others, the condition persists and may require some treatment. A small group of patients develop a more serious form of the disease which is more aggressive. This may need long term treatment.
Sometimes symptoms may suddenly get worse - this is known as a ‘flare-up’. This may be triggered by stress, infections, a change in environment, or often something unknown.
A much smaller group of patients develop permanent scarring of their lungs (called pulmonary fibrosis).
How is sarcoidosis treated?
Treatment may be required for patients whose sarcoidosis is causing severe symptoms or is preventing the affected organ(s) from working normally.
Medications
Steroids are produced naturally in the body by the adrenal gland. An additional steroid in the form of prednisolone can be given by your specialist to attempt to treat your sarcoid.
They are usually given in tablet form but may be given by injection into a vein. If you take steroid tablets on a long-term basis, you should not stop them suddenly.
You will be given a ‘steroid emergency card’ which you should always carry with you.
Your specialist may also check if you need treatment against some side effects of steroids such as bone protection medication and anti-reflux treatment.
Sometimes steroids may not be completely effective, or cause side effects. Other medications may be used, either alone or in combination, to help reduce the steroid dose. These are often called ‘immunosuppressive’ or ‘steroid- sparing’ medications. Methotrexate, Mycophenolate mofetil, and azathioprine are commonly used. We may use methotrexate on its own (without steroids) as a first treatment for some patients too.
Whilst you are taking immunosuppressant medication you will require regular blood tests to monitor your response to the treatment.
Clinical trials
You can ask about clinical trials which test new treatments. Joining is voluntary.
How can I help myself?
- Have your seasonal vaccinations (COVID-19 and flu) and the pneumonia vaccination (only once).
- You may be eligible for benefits like PIP (Personal Independence Payment) if you need help with personal care or getting about.
- Our specialist nurses runs a regular Pulmonary Fibrosis Support Group which is a space for discussion with other patients with similar lung conditions. Here we also aim to have presentations from a variety of guest speakers and charities.
- Keep active and do what you enjoy!
Resources
Sarcoidosis UK charity
SarcoidosisUK - Information, Support, Awareness & Research
Asthma and Lung UK
Asthma + Lung UK
Action for pulmonary fibrosis
www.actionpf.Home
Date published: 11 June 2026 Review due: 30 June 2029 PI number: BFT002701