Sarcoidosis

Overview

Sarcoidosis is a condition where small clumps of inflammatory cells, called granulomas, form in different parts of the body. These clumps most often appear in the lungs and lymph nodes, but they can also affect the skin, eyes, heart, and other organs. The inflammation usually goes away on its own, but sometimes it can cause lasting damage.

Sarcoidosis is considered a rare disease, but it affects about 1 in 10,000 people in the UK. It is more common in some ethnic groups, such as people of African or Caribbean descent, and in people of Scandinavian or Irish heritage.

Sarcoidosis most often affects adults between the ages of 20 and 40, but it can occur at any age. It is slightly more common in women than in men. People with a family history of sarcoidosis may be at higher risk.

Symptoms

Common symptoms

• Persistent dry cough
• Shortness of breath, especially during activity
• Fatigue (feeling very tired)
• Swollen lymph nodes (often in the neck, armpits, or groin)
• Skin rashes, often red or purple bumps on the shins or face
• Joint pain and swelling, especially in the ankles and knees
• Weight loss and night sweats

Symptoms in children

• Skin rashes and eye redness are more common in children.
• Children may also have swelling in the lymph nodes and general tiredness.
• Symptoms can be mistaken for other childhood illnesses.

Symptoms in older adults

• Older adults may have more fatigue, weight loss, and joint pain.
• They are more likely to have sarcoidosis that affects the lungs or heart.
• Symptoms can be harder to tell apart from other age-related health problems.

Causes

Main causes

• The exact cause of sarcoidosis is unknown. It is believed to be an overactive immune response to something in the environment, such as an infection, dust, or chemicals.
• There is likely a genetic component — having certain genes may make you more likely to develop sarcoidosis after being exposed to a trigger.

Risk factors

• Family history (a parent or sibling with sarcoidosis)
• Being of African, Caribbean, Scandinavian, or Irish descent
• Age between 20 and 40 years
• Being a woman (slightly higher risk)

When to see a doctor

See a doctor urgently if:

• If you have sudden chest pain, shortness of breath, or vision changes, call your local emergency number immediately.
• If you have palpitations (feeling your heart race or skip a beat) that are new or severe, seek urgent care.

Book a routine appointment if:

• If you have a cough that lasts more than a few weeks, or unexplained fatigue, joint pain, or skin changes.
• If you have been diagnosed with sarcoidosis and your symptoms are not improving or are getting worse.
• If you have any new symptoms, especially related to your eyes or heart.

Diagnosis

Sarcoidosis can be tricky to diagnose because its symptoms are similar to many other conditions. Your doctor will start with a medical history and physical exam, and then use tests to look for signs of inflammation and granulomas.

Tests that may be done

• Chest X-ray or CT scan to check for granulomas in the lungs and lymph nodes
• Blood tests to measure inflammation and check liver and kidney function
• Lung function tests (spirometry) to see how well your lungs are working
• A biopsy — taking a small sample of tissue from a lung, lymph node, or skin to look for granulomas under a microscope
• Electrocardiogram (ECG) or heart ultrasound if the heart is affected
• Eye exam if you have eye symptoms

What to expect at your appointment

The diagnosis process may take a few weeks. Your doctor may refer you to a specialist, such as a lung doctor (pulmonologist) or a rheumatologist. They will explain each test and what the results mean. If sarcoidosis is found, they will talk with you about next steps, which may include monitoring or treatment.

Treatment

Treatment for sarcoidosis depends on how severe your symptoms are and which organs are affected. Many people do not need treatment because the condition gets better on its own. When treatment is needed, the goal is to reduce inflammation and control symptoms. Your doctor will discuss the best approach for you, which may include medications to calm the immune system or treat specific organs.

Self-care at home

• Get plenty of rest and pace yourself to manage fatigue.
• Avoid smoking and exposure to lung irritants like dust, fumes, and second-hand smoke.
• Stay hydrated and eat a balanced diet to support your immune system.

Medical treatments

If treatment is needed, doctors often use medications that reduce inflammation and suppress the immune system. These can include corticosteroids (usually given as pills or sometimes as inhalers) and other medicines that help control the immune response. You may also receive treatment for specific symptoms, such as eye drops for eye inflammation or pain relievers for joint pain. All treatments will be carefully chosen based on your individual situation. Never take any medication without your doctor’s advice.

When is surgery considered?

Surgery is rarely needed for sarcoidosis. In very rare cases, surgery might be used to remove a granuloma that is causing problems, or to place a device (like a pacemaker) if sarcoidosis affects the heart's electrical system. Your doctor will only recommend surgery if absolutely necessary.

Living with this condition

Living with sarcoidosis often means learning to manage tiredness and other symptoms. Many people feel fine most of the time, but you may need to take breaks on days when you feel more tired. Keep a symptom diary and share it with your doctor. Stay in touch with your healthcare team and attend all follow-up appointments.

Lifestyle tips

• Avoid smoking and limit alcohol, as they can make symptoms worse.
• Protect your skin from the sun — some treatments can make you more sun-sensitive.
• Get regular check-ups for your eyes and heart if your doctor advises it.

Diet and exercise

A healthy diet rich in fruits, vegetables, and whole grains can support your immune system. There is no special diet for sarcoidosis. Gentle exercise, like walking or swimming, can help with fatigue and joint stiffness. Talk to your doctor before starting any new exercise plan, especially if you have lung or heart symptoms.

Mental health and emotional wellbeing

Living with a chronic condition can be stressful and may affect your mood. It is normal to feel worried or down at times. Talk to your doctor if you feel overwhelmed — they can offer support or refer you to a counselor. If you ever have thoughts of harming yourself, reach out for help immediately.

Prevention

There is no known way to prevent sarcoidosis because its exact cause is unknown. You cannot reduce your risk through lifestyle changes. Early diagnosis and treatment can help prevent complications.

Vaccines

There is no vaccine for sarcoidosis. However, it is important to stay up-to-date with recommended vaccines, such as the flu shot and pneumonia vaccine, especially if you have lung involvement. Discuss vaccinations with your doctor.

Screening programmes

There is no routine screening test for sarcoidosis in the general population. If you have a family history or symptoms, your doctor may recommend tests to check for the condition.

Complications

If left untreated

• Scarring of the lungs (pulmonary fibrosis) that can cause long-term breathing problems
• Eye inflammation that can lead to glaucoma, cataracts, or vision loss if not treated
• Damage to the heart's electrical system, causing abnormal heart rhythms or even heart failure
• Kidney problems due to high calcium levels caused by sarcoidosis

Long-term outlook

For most people, sarcoidosis gets better on its own within a few years without lasting problems. Even when treatment is needed, the outlook is generally good. With proper medical care, most people can manage their symptoms and continue with their normal activities. Serious complications are rare, and your doctor will monitor you to catch any problems early.

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