Sarcoidosis

Inflammation that forms small lumps, most often in the lungs. Many people need no treatment at all, which is hard to be told.

What it is

A condition in which the immune system forms small clusters of inflammatory cells, called granulomas, in organs around the body. The lungs and the lymph nodes in the chest are affected in the great majority, but it can involve the skin, eyes, heart, nervous system, liver and joints.

The cause is unknown. It is more common in adults between 20 and 40, and it is significantly more common and more severe in people of African and Caribbean heritage, which is an inequality worth naming.

The course varies enormously. In many people it settles by itself within two years and needs no treatment beyond monitoring. In others it becomes chronic and causes lasting lung scarring.

Two forms are dangerous and need actively looking for, because they can be silent until they are not: **cardiac sarcoidosis**, which causes rhythm problems and sudden death, and **eye involvement**, which causes uveitis and can threaten sight.

Treatment when needed is usually steroids, sometimes with steroid-sparing drugs. See Cushing's syndrome for what long-term steroids do.

Löfgren's syndrome, a combination of fever, painful red shins, swollen ankles and chest lymph node enlargement, is an acute form with a good outlook.

Signs you might notice

A persistent dry cough, breathlessness on exertion, chest discomfort.

Extreme fatigue, which is often the worst symptom and the least addressed.

Tender red or purple lumps on the shins, and other skin changes including lumps around scars and tattoos.

Swollen, painful joints, particularly the ankles.

Painful red eyes, blurring or light sensitivity, which needs same-day eye assessment.

Fever, night sweats, weight loss, swollen lymph nodes.

Urgent: palpitations, fainting, chest pain, or a very slow pulse, which may mean cardiac involvement; and any change in vision.

Often it is found by accident on a chest X-ray in someone with no symptoms.

How it can affect day-to-day life

Being told there is a disease and that nobody is going to treat it is genuinely hard, and it is the correct approach for many people. The reasoning deserves explaining properly rather than being delivered as reassurance.

The fatigue is disproportionate to the lung findings and is the main cause of lost work and reduced life. It is often dismissed because tests look reasonable.

Because it can affect so many organs, people bounce between specialists with nobody holding the whole picture. Asking who is coordinating is a fair question.

Steroid courses are frequently long, and bone, blood sugar and stomach protection should be in place from the start.

Small numbers of people develop pulmonary hypertension or advanced lung scarring; a decline in exercise tolerance deserves investigation rather than acceptance.

Supporting someone well

Ask specifically whether the heart and eyes have been assessed. Both can be silent and both are the reason people come to harm.

Ask for an ECG at diagnosis, and say so if there are any palpitations or blackouts.

Get an eye examination, and go the same day for a red or painful eye.

Take the fatigue seriously and ask for pacing support; see occupational therapy.

If on steroids, ask about bone protection, blood pressure, glucose and a steroid card.

Ask who is coordinating care when several specialties are involved.

Keep a record of breathlessness and exercise tolerance; a trend is what triggers action.

Where to get help

A GP practice, then respiratory medicine, and a specialist interstitial lung disease service where available.

Same-day eye assessment for a red or painful eye; 999 for collapse or chest pain.

SarcoidosisUK run a nurse helpline and are the specialist charity.

Asthma + Lung UK helpline: 0300 222 5800.