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.

The information on this page has been compiled with the help of sarcoidosis specialists Dr K. Bechman and Dr J. Galloway, Rheumatology, Kings College Hospital, London.

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.

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 about 3,000 to 4,000 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 69% of respondents were female and 31% were male (7,002 participants.)

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.)

Frequently quoted American research says that people of African and Scandinavian heritage have a greater chance of contracting the condition, implying a genetic element.

Read More About Sarcoidosis…

Etymology and History of Sarcoidosis

The word “sarcoidosis” comes from Greek sarcο- meaning “flesh”, the suffix -(e)ido meaning ” resembles”, and -sis, a common suffix in Greek meaning “condition”. Thus the whole word means “a condition that resembles crude flesh”. 

Sarcoidosis was first described in 1877 by English dermatologist Dr. Jonathan Hutchinson as a condition causing red, raised rashes on the face, arms, and hands. Between 1909 and 1910 uveitis in sarcoidosis was first described, and later in 1915 it was emphasised, by Dr. Schaumann, that it was a systemic condition.

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, environmental and infectious 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?

Sarcoidosis can affect almost any part 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 may be commonly involved are the skin, eyes and lymph glands elsewhere in the body.

The 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.

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 test 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 and urine tests Your physician may arrange some blood and urine 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. Raised ACE levels do not necessarily indicate the presence of sarcoidosis however.

Lungs If your physician suspects your lungs may be affected, they will usually arrange a chest x-ray or CT scan and breathing tests, most commonly spirometry test and pulmonary function test (PFT).

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 heart may be scanned using an electrocardiogram (ECG) or echocardiogram (echo). All these scans will look for granulomas in the tissue as signs or inflammation.

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 ‘chronic’ 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.

Between 1 – 7% of patients die from sarcoidosis (this figure varies widely depending on the population studied and type of sarcoidosis).

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 sometimes necessary for patients who 1) are in danger of organ failure and / or 2) experience significant impairment of quality of life. Sometimes simple painkillers (paracetamol or non-steroidal anti-inflammatory such as ibuprofen) may help to ease the symptoms.

Some patients will definitely require treatment, including those with cardiac and neurological involvement.

Corticosteroids are used to treat sarcoidosis by reducing inflammation in the affected organ. These are known as immune medications. The most commonly used corticosteroid is prednisolone (prednisone in the USA). 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.

Sometimes corticosteroids may not be effective, or cause serious 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.

Immunosuppressant medications may be used, either alone as an alternative drug or in combination, to reduce the steroid dose. These medications are most commonly Methotrexate, Azathioprine or Mycophenolate.

Chronic cases of sarcoidosis can usually be controlled by drugs. In rare cases, some patients need oxygen and or 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. Please check the specific pages using the menu above for more information on treatments for specific types of sarcoidosis.

Related content from SarcoidosisUK:

Sarcoidosis and the Lung

Do you have pulmonary sarcoidosis? Does sarcoidosis affect your lungs. Click here to learn more.

Sarcoidosis and the Skin

Do you have skin sarcoidosis? Erythema Nodosum, Lupus Pernio and Lesions are common signs. Read more.

Sarcoidosis and the Eye

About half of sarcoidosis patients experience eye symptoms. Read more about how sarcoidosis can affect the eye.

Sarcoidosis and the Joints, Muscles and Bones

Does sarcoidosis affect your joints, muscles or bones? Click below to find more information.

Sarcoidosis and the Nervous System

Sarcoidosis can affect the nervous system (neurosarcoidosis). Click below to read more.

Sarcoidosis and the Heart

Sarcoidosis can affect the heart directly and indirectly as a result of sarcoidosis in the lung. Read more info here.

Sarcoidosis and Fatigue

Do you experience fatigue? Find symptoms, treatment and more information about sarcoidosis and fatigue.

Consultant Directory

Do you want to find a consultant? Use our directory to find a sarcoidosis specialist or clinic near you.

SarcoidosisUK Support

How can we support you? Find more information on our Nurse Helpline, Support Groups and Online Support.

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