Living with sarcoidosis living

Overview

Sarcoidosis is a condition in which small groups of immune cells form swollen areas called granulomas in parts of the body. These most often appear in the lungs and lymph nodes, but they can affect other organs like the skin, eyes, and heart. It is not cancer and it is not contagious.

Sarcoidosis is relatively uncommon. In the UK, about 1 in 10,000 people are diagnosed each year, though many cases may not be noticed.

It most often begins between the ages of 20 and 40. It is more common in women and in people of African or Caribbean background. People with a family history may also have a higher chance.

Symptoms

Common symptoms

• A dry cough that does not go away
• Shortness of breath, especially with activity
• Tiredness or fatigue that is not helped by rest
• Painful joints or swollen fingers
• Small, red or dark bumps on the skin (often on the shins)
• Swollen lymph nodes in the neck, armpit, or groin
• Irritated or dry eyes
• Unexplained weight loss or night sweats

Causes

Main causes

• The exact cause is unknown, but it appears to be an overreaction of the body's immune system.
• When the immune system fights off an infection or another trigger, it may keep reacting and form granulomas.
• Genes may play a role, so having a family member with sarcoidosis raises your chances.
• Some environmental factors, such as exposure to dust, mold, or certain chemicals, may contribute, but this is not proven.

Risk factors

• Age between 20 and 40
• Being female
• African or Caribbean ancestry
• Having a parent, brother, or sister with sarcoidosis
• Working in jobs that involve certain dusts or fumes (e.g., firefighters, healthcare workers, agriculture) – although the link is weak

When to see a doctor

See a doctor urgently if:

• If you have sudden or severe breathing problems, chest pain, or coughing up blood, get emergency help right away.
• If you suddenly lose vision or have severe eye pain, seek urgent care.

Book a routine appointment if:

• If you have a cough, breathlessness, unusual tiredness, or skin changes that last more than a few weeks, make an appointment with your GP.
• If you already have sarcoidosis and your symptoms get worse or new ones appear, contact your specialist team.

Diagnosis

To diagnose sarcoidosis, your doctor will ask about your symptoms and medical history, listen to your lungs, and check your skin, lymph nodes, and eyes. Because the symptoms can be similar to other conditions, you will likely need some tests.

Tests that may be done

• Chest X-ray to look for granulomas or enlarged lymph nodes
• CT scan (a detailed picture of your chest) if more detail is needed
• Blood tests to check your immune system and rule out other causes
• Pulmonary function tests to see how well your lungs are working
• A biopsy – a small sample of tissue taken from your skin, lung, or lymph node – to confirm the diagnosis

What to expect at your appointment

It can take a few appointments to make the diagnosis. You may be referred to a specialist such as a respiratory doctor or a dermatologist. Many tests are painless, and the most invasive one, a biopsy, is usually quick and done under local anaesthetic. Your doctor will explain each step.

Treatment

Treatment is not needed for everyone. If your symptoms are mild and your organs are healthy, your doctor may suggest keeping a close watch. When treatment is needed, the aim is to reduce inflammation, relieve symptoms, and protect your organs.

Self-care at home

• Rest when you need to and pace yourself through the day
• If you smoke, try to stop – smoking makes lung symptoms worse
• Stay as active as you comfortably can – gentle movement can help your energy levels
• Protect your skin from the sun if you have skin rashes
• Keep your regular appointments so your condition can be monitored

Medical treatments

Doctors may prescribe medicines to reduce inflammation, such as steroid tablets, or medicines that calm the immune system. They may also offer medicines for specific symptoms like tiredness, joint pain, or eye irritation. The exact choice depends on which organs are affected and how active the condition is. Your doctor will discuss the benefits and possible side effects with you.

When is surgery considered?

Surgery is rarely needed for sarcoidosis. In very severe cases that do not respond to other treatments, or if a granuloma is pressing on a vital organ, an operation may be considered. This is not a common part of treatment for most people.

Living with this condition

Living with sarcoidosis can be unpredictable. Some days you will feel fine and others you may feel very tired. Work with your healthcare team to find a routine that fits your energy levels. Keep a note of symptoms and bring it to your appointments.

Lifestyle tips

• Do not smoke and avoid second-hand smoke
• Limit alcohol, especially if you are taking medicines that affect your liver
• Manage stress with relaxation, breathing exercises, or hobbies you enjoy
• Stay connected with friends and family so you do not feel isolated
• Get enough sleep to help your body recover

Diet and exercise

There is no special diet proven to treat sarcoidosis, but a balanced diet with plenty of fruits, vegetables, whole grains, and lean protein supports your health. Regular gentle exercise – like walking, swimming, or yoga – can help reduce fatigue and keep your joints moving. If you have lung issues, talk to a physiotherapist or your specialist before starting a new exercise programme.

Mental health and emotional wellbeing

Living with a long-term condition can bring worry, anxiety, or low mood. It is normal to feel this way. Tell your doctor if you feel low, because talking therapies and support groups can help. If you ever feel you might harm yourself, reach out to your local mental health crisis service immediately.

Prevention

There is no known way to prevent sarcoidosis because the cause is not fully understood. The best you can do is maintain a healthy lifestyle and avoid things like smoking that can worsen symptoms.

Vaccines

Keep your routine vaccinations up to date, including the yearly flu vaccine. Talk to your doctor or pharmacist about which vaccines are right for you, especially if you have a weakened immune system.

Screening programmes

There is no general screening test for sarcoidosis. If you have a family history and develop any lasting symptoms, mention this to your doctor.

Complications

If left untreated

• Persistent inflammation can lead to scarring (fibrosis) in the lungs, making breathing harder over time
• Granulomas can affect the heart, causing abnormal heart rhythms – though this is uncommon
• Eye inflammation can lead to vision problems if not treated
• Kidney stones or kidney damage can occur in some people
• Rarely, the nervous system can be affected

Long-term outlook

For most people, sarcoidosis is not life-threatening and often improves on its own. About half of those with lung involvement recover within three years. In others, it may last longer or come and go, but treatments work well to manage symptoms. With good medical care, most people continue to lead full and active lives.

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