SarcoidosisUK Information - Find out more Information About Sarcoidosis

ABOUT SARCOIDOSIS

This page contains general information about sarcoidosis. For information on specific types of sarcoidosis use the menu above. Every case of sarcoidosis is unique, and you should always consult your doctor about your treatment plan. The information below is based on evidence but should not be taken as a substitute for medical advice.

What is Sarcoidosis?

Sarcoidosis is a condition where lumps called granulomas develop at different sites within the body. These granuloma are made up of clusters of cells involved in inflammation. If many granuloma form in an organ, it can prevent that organ from working properly. Sarcoidosis can affect many different parts of the body. It often affects the lungs but can also affect the skin, eyes, joints, nervous system, heart and other body parts.

Please read more information on different types of sarcoidosis by selecting the relevant page from the drop-down menu under 'Information' on the menu bar above.

Further Information About Sarcoidosis

Sarcoidosis Overview, EULAR Textbook on Rheumatic Diseases, (2015), Chapter 18, Section 2, Page 493.(Provided courtesy of EULAR: please visit the EULAR website to read the whole chapter.)
Patient Information for SarcoidosisBritish Thoratic Society, Thorax (2008); 63, supplement V.

Who Develops Sarcoidosis?

Sarcoidosis is often misdiagnosed as something else and there is disagreement about how many people live with the condition. However we know that sarcoidosis is rare. Most specialists agree that around 1 in every 10,000 people have sarcoidosis in the UK. Every year in the UK around 3,000 people are diagnosed with sarcoidosis.

Sarcoidosis is prevalent in both men and women as well as all major ethnicities. There has been some research suggesting that it is slightly more prevalent in women than men. Our own research agrees with that. - in SarcoidosisUK's community survey of 7,002 particpants. 5,523 told us their gender, of which 3,785 (69%) were female and 1,738 were 31% male.

Sarcoidosis can occur at any age, but commonly affects adults in their 30s or 40s. 4,833 individuals in our community survey told us their age. The data indicates that sarcoidosis is prevalent in all age groups - with 80% of cases being between 37 and 65. The average reported age was 50. Please note these are not ages at diagnosis but ages provided at the time of the report.

male female graph
Age graph

What causes Sarcoidosis?

The exact cause of sarcoidosis is not known. So far no single cause triggering sarcoidosis has been identified. It is probably a rare combination of genetic and environmental factors. The condition does seem to run in some families.

SarcoidosisUK is taking the lead in funding medical research to identify the causes and find a cure. Read more about SarcoidosisUK's research.

A number of websites claim to understand the causes of sarcoidosis and will sell you a cure. Please always consult your doctor before considering an alternative therapy.

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, legs

Patients with sarcoidosis may feel tired and lethargic, lose weight or suffer with 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?

Sarcoidosis is difficult to diagnose because the symptoms resemble other diseases. There is no single tests to diagnose sarcoidosis.

A detailed history and examination by your physician is the most important first step in diagnosing sarcoidosis. They will determine which parts of your body may be affected. Every case is unique, but you can expect the doctor to look at your blood cells, calcium levels and liver and kidney function. They may also give you a breathing test to check your lungs, and heart tests. These are all very standard procedures.

Blood tests Your physician may arrange some blood tests to look for signs of inflammation, to check your kidney and liver function and your calcium levels. They may also check a marker in your blood called angiotensin-converting enzyme (ACE), which is sometimes raised in patients with sarcoidosis.

Lungs If your physician suspects your lungs may be affected, they will usually arrange a chest x-ray and breathing tests (spirometry).

Scans Your physician may also arrange imaging scans (CT scan or PET CT scan) to look for other parts of your body that may be affected but might not be causing you any symptoms. The scans will look for inflammation (granulomas).

Biopsy In order to make a definite diagnosis of sarcoidosis a sample of tissue (biopsy) is taken from one of the areas of inflammation (granuloma).

As sarcoidosis can affect many different parts of the body, your physician may ask other specialists (who specialise in the part of your body affected by sarcoidosis) to look after you as well.

The Outlook

Sarcoidosis resolves spontaneously in most patients. In others, the condition may persist but does not require treatment.

In the minority that do develop a more serious form of the disease, more aggressive and prolonged treatment is sometimes required.

An even smaller proportion of patients present with life-threatening symptoms, particularly in those with heart or nerve involvement.

Healthy Living

Sometimes patients’ symptoms may suddenly get worse (‘flare-up’). This may be triggered by stress, illness or nothing recognisable. Make sure you eat healthily, pace yourself, talk to friends and family and recognise mental health problems. It is common for sarcoidosis patients to want more information on how nutrition and diet could help their condition. SarcoidosisUK recognise that this is an important and complicated issue - we intend to provide more evidenced nutritional guidance through this website very soon. Please contact SarcoidosisUK for professional support.

Treatment of Sarcoidosis

There is no known cure for sarcoidosis. The disease may resolve spontaneously without the need for medication in around 60% of patients. In this case you may find that your doctor will just monitor you for the first few months.

Treatment is often necessary for others who experience symptoms or where their condition is affecting the functioning of body organs. Sometimes simple painkillers (paracetamol or non-steroidal anti-inflammatory such as ibuprofen) may help to ease the symptoms.

Corticosteroids The drugs used to treat sarcoidosis do so by reducing inflammation in the body. These are known as immune medications. The most commonly used drug in sarcoidosis is corticosteroids (prednisolone). This can be taken as a tablet or given at a higher dose via a vein. Treatment with prednisolone is often required for at least 6 to 24 months.

Sometime corticosteroids may not be effective, or cause side effects. Your doctor  should discuss the benefits of steroid treatment, and the side effects, with you. Side effects may be major and can include blood pressure, diabetes, osteoporosis, weight gain, and bruising. Other immune medications may be used, either alone as an alternative drug or in combination, to reduce the steroid dose. These medications include Methotrexate, Azathioprine or Mycophenolate

Chronic cases of sarcoidosis can usually be controlled by drugs. In rare cases, some patients need oxygen and or even lung transplants. Equally rarely, damage to or near the heart can require a pacemaker or other treatments. Other treatments may also be necessary when the eyes and skin are affected by sarcoidosis.