WHAT IS SARCOIDOSIS?
This page contains general information about sarcoidosis – it is a good place to start if you are new to the condition. For more in depth information on specific types of sarcoidosis (e.g. affecting lungs, eyes, skin etc.) please use the menu above.
Every case of sarcoidosis is unique; you should always consult your doctor about your treatment plan. The information below is based on best practice and 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 R. Coker, Respiratory Medicine, Hammersmith Hospital, London and Dr K. Bechman & 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. Granulomas are made up of clusters of cells involved in inflammation. If many granulomas form in an organ, they 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 parts of the body.
Please read more information on different types of sarcoidosis by selecting the relevant page from the drop-down menu under ‘Types of Sarcoidosis’ 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.
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 online 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.
What Causes Sarcoidosis?
The exact cause of sarcoidosis is not known. It probably involves a precise combination of genetic and environmental factors. The condition does run in some families. So far, a single factor causing sarcoidosis has not been identified.
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 Parts of the Body are Affected?
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.
What are the Symptoms of Sarcoidosis?
The symptoms of sarcoidosis depend on which part of the body is affected. They can include:
- 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 (fatigued), 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.
Read More About Sarcoidosis…
- Sarcoidosis FAQs – developed by SarcoidosisUK with the help of the SarcoidosisUK Helpline Nurses, SarcoidosisUK Patient Council and specialist consultants.
- An Excellent Academic Overview of Sarcoidosis, 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.)
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”. Therefore the whole word can be translated as something like “a condition that resembles 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. By 1915 it was first emphasised, by Dr. Schaumann, that it was a systemic condition (affecting the whole body).
Read more: Definition and history of sarcoidosis (Sharma, 2005).
Definition of Sarcoidosis
Sarcoidosis is famously hard to define. This is partly because of how complicated the condition can be and partly because of the lack of any known cause. SarcoidosisUK’s definition is at the top of this page. Below are some other definitions to help you more easily understand and explain sarcoidosis.
Common definition (use with friends/family/employer):
Sarcoidosis is a condition that can affect any part of the body, most often the lungs. Clumps of cells called ‘granulomas’ stop the affected organ(s) working properly. There is no known cause or cure. It affects everyone differently and the symptoms depend on the organ(s) affected. In most cases, sarcoidosis can be managed by medication and goes away after a few months or years. In the long-term it can lead to serious organ damage.
Clinical definition (use with healthcare professionals):
Sarcoidosis is a systemic granulomatous disease that primarily affects the lung and lymphatic systems of the body. A diagnosis of the disorder usually requires the demonstration of typical lesions in more than one organ system and exclusion of other disorders known to cause granulomatous disease. The appropriate therapy for the disorder also has not been well defined for all patients. Most importantly, the cause of the disorder is still unknown.
Official definition (for legal/official purposes):
Sarcoidosis is a multisystem disorder of unknown cause characterized by the formation of immune granulomas in involved organs. The lung and the lymphatic system are predominantly affected, but virtually every organ may be involved. Other severe manifestations result from cardiac, neurological, ocular, kidney or laryngeal localizations.
(World Health Organisation, International Classification of Diseases, 11th Revision (ICD-11), June 2018)
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How is Sarcoidosis Diagnosed?
Sarcoidosis is difficult to diagnose because the symptoms often resemble other diseases. There is no single or specific test to diagnose sarcoidosis.
A detailed history and examination by your doctor is the most important first step in diagnosing sarcoidosis. They will determine which parts of your body may be affected.
Blood tests Your doctor may arrange 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 doctor suspects your lungs may be affected, they will usually arrange a chest X-ray and breathing tests (spirometry).
Scans Your doctor 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 help make a definite diagnosis of sarcoidosis a sample of tissue (a biopsy) is taken from one of the areas of inflammation (granuloma) using a bronchoscopy, sometimes as part of an EBUS procedure.
As sarcoidosis can affect many different parts of the body, your doctor may ask other specialists (who specialise in the part of your body affected by sarcoidosis) to look after you as well. SarcoidosisUK has further information on all the different types of sarcoidosis, please use the menu above to find the best information for you.
Sarcoidosis gets better without treatment in most patients (around 60%). In others, the condition persists and may require some treatment.
In the minority of patients that develop a more serious form of the disease, more aggressive and prolonged treatment is sometimes required.
A much smaller proportion of patients present with life-threatening symptoms, particularly in those with pulmonary fibrosis (lung scarring) or heart or neurological involvement.
Treatment of Sarcoidosis
There is currently no known cure for sarcoidosis.
Treatment is often necessary for patients whose sarcoidosis is causing severe symptoms or is preventing the affected organ(s) from functioning normally. Sometimes simple painkillers (paracetamol or non-steroidal anti-inflammatory such as ibuprofen) may help to ease the symptoms.
The drugs used to treat sarcoidosis do so by reducing inflammation in the body. These are known as immunosuppressants. The most commonly used drugs are corticosteroids. These can be taken as a tablet (prednisolone) or given at a higher dose via a vein (methylprednisone). Treatment with corticosteroids is often required for at least 6 to 24 months.
Sometimes corticosteroids may not be completely effective, or cause side effects. Other immunosuppressants may be used, either alone or in combination, to help reduce the steroid dose. These medications include Methotrexate, Azathioprine and 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.
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.
Please contact SarcoidosisUK or your GP for further professional support.
Page last updated: October 2022. Next review: October 2023.
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.
Do you want to find a consultant? Use our directory to find a sarcoidosis specialist or clinic near you.
How can we support you? Find more information on our Nurse Helpline, Support Groups and Online Support.