Sarcoidosis risk factors: who is more likely to get it

What sarcoidosis is

Sarcoidosis is a condition in which groups of immune system cells form red, swollen (inflamed) lumps called granulomas in organs of the body. It can affect any organ, but most often it affects the lungs and the lymph nodes in the chest (NHLBI).

NHLBI says many people recover with few or no long-term problems. Sometimes the disease causes permanent scarring (fibrosis) in the lungs or other organs, which can lead to life-threatening heart or lung problems (NHLBI).

What causes it

In sarcoidosis, the inflammation the immune system uses to fight germs goes off track and forms granulomas. Studies suggest that immune triggers can lead to sarcoidosis in some people. These triggers can include infections that cause no symptoms or contact with substances in the environment, and your genes can affect how your immune system reacts to a trigger (NHLBI). MedlinePlus names insecticides and mold as examples of such substances (MedlinePlus).

Risk factors

NHLBI says some risk factors, such as where you work, can be changed, while others, such as age and family history, cannot. It lists (NHLBI):

• Age: sarcoidosis can start at any age, but the risk goes up as you get older, especially after age 55.
• Environment: living or working near insecticides, mold or other substances that may cause inflammation raises the risk. NHLBI says people in health care or the automotive industry, farmers and firefighters may be around these substances.
• Family history and genetics: having a close relative with sarcoidosis raises the risk.
• Medicines: certain HIV medicines and monoclonal antibodies used to treat cancer or an overactive immune system can raise the risk.
• Race or ethnicity: the risk is higher in people of African or Scandinavian descent.
• Sex: women are more likely to have sarcoidosis, although men can have it too.

NHLBI adds that other medical conditions, such as lymphoma, a type of blood cancer, can also lead to sarcoidosis (NHLBI). MedlinePlus gives the same list and says anyone can develop sarcoidosis (MedlinePlus).

There are no screening tests that show who will develop sarcoidosis. If you are at risk, NHLBI says your provider may talk with you about trying to avoid substances in your environment that can trigger granulomas (NHLBI).

Symptoms

Many people with sarcoidosis have no symptoms, or they feel unwell without any obvious symptoms. Others feel very tired, depressed or generally unwell, and some faint or lose weight without trying (NHLBI). MedlinePlus lists general symptoms such as fatigue, weight loss, swollen lymph nodes, depression, fever and night sweats (MedlinePlus).

In the lungs, sarcoidosis may cause (NHLBI):

• wheezing
• coughing
• shortness of breath
• chest pain

You can also have sarcoidosis in the lungs without these symptoms. Depending on which organs are affected, NHLBI lists other symptoms such as a larger than normal liver or spleen, jaundice, nervous system problems (headache, dizziness, vision problems, seizures, mood swings, hallucinations or nerve pain), heart palpitations or an irregular heartbeat, belly pain, nausea or vomiting, muscle pain and swollen salivary glands (NHLBI).

Lofgren's syndrome

Some people have a classic set of symptoms called Lofgren's syndrome when sarcoidosis first starts: swollen lymph nodes in the chest, neck, chin, armpits or groin; a rash of small itchy or painful bumps called erythema nodosum; blurred vision, eye pain or redness, light sensitivity or watery eyes; joint pain, stiffness or swelling; and fever. NHLBI says it is most common in women between ages 30 and 40 and usually goes away completely within 2 years (NHLBI).

How sarcoidosis is found

NHLBI says sarcoidosis is diagnosed from your symptoms, a physical exam and imaging tests or a biopsy, after other possible conditions are ruled out. It suggests telling your provider if you live or work near insecticides or mold or have other risk factors (NHLBI). Sarcoidosis is often found because a chest X-ray was done for another reason (NHLBI). MedlinePlus notes there is no single test for it, and its symptoms can look like many other conditions (MedlinePlus).

Not everyone needs treatment (MedlinePlus), and sometimes the condition goes away on its own (MedlinePlus). Treatment depends on the symptoms and which organs are affected (NHLBI). NHLBI says sarcoidosis only rarely affects the heart, but cardiac sarcoidosis may be life threatening (NHLBI). See also cardiomyopathy risk factors.

Living with sarcoidosis

NHLBI advises ongoing care even without symptoms, because flares can follow remission, most often within six months of stopping treatment. It also suggests regular physical activity, quitting smoking and avoiding other lung irritants such as dust, chemicals and secondhand smoke, and getting enough good quality sleep (NHLBI).

Common questions

Is sarcoidosis the same as COPD or pulmonary hypertension?

No. Sarcoidosis is an immune condition that forms granulomas in organs (NHLBI). It is a separate condition from COPD and pulmonary hypertension, which have their own risk factor guides here.

NHLBI lists sarcoidosis among the conditions that can damage the lungs and raise the risk of an interstitial lung disease (ILD) (NHLBI); see interstitial lung disease risk factors.

Does sarcoidosis run in families?

Having a close relative with sarcoidosis raises your risk, and NHLBI says your genes can affect how your immune system reacts to a trigger (NHLBI).

Can my job raise my risk?

It can. Living or working near insecticides, mold or other substances that may cause inflammation raises the risk, and NHLBI names health care, the automotive industry, farming and firefighting as settings where people may be around them (NHLBI).