A Guide to Sarcoidosis
The symptoms of sarcoidosis depend on the organ affected. When sarcoidosis occurs in the lungs, it can lead to wheezing, coughing, shortness of breath, and chest pain.
Some cases of sarcoidosis resolve on their own, while others may result in chronic conditions. Treatment may reduce inflammation and includes corticosteroids, immunosuppression therapy, and healthy lifestyle practices.
Explore this article for details about sarcoidosis, including types of sarcoidosis, causes, treatments, and more.
Sarcoidosis is inflammation that can affect various organs and body areas for no known reason. Sarcoidosis is not an infection.
Inflammation is an expected part of this immune response, but it usually subsides once the foreign substance or germs disappear.
With sarcoidosis, the inflammation mistakenly continues. Granulomas form when immune cells form clumps of tissue. Granulomas can scar and damage the organ in which they form.
The condition can affect any organ in the body, but it most often occurs in the lungs. It can also affect the skin, eyes, heart, liver, or lymph nodes.
Sarcoidosis most often affects the lungs, but granulomas can occur in any organ in the body. It also commonly affects the skin, eyes, liver, or lymph nodes.
The symptoms of sarcoidosis depend on the affected organ. Symptoms may become severe at any time.
The types of sarcoidosis and the organs affected include:
- Pulmonary sarcoidosis: lungs
- Cardiac sarcoidosis: heart
- Cutaneous sarcoidosis: skin
- Hepatic sarcoidosis: liver
- Gastrointestinal sarcoidosis: gastrointestinal tract
- Musculoskeletal sarcoidosis: joints and muscles
- Neurosarcoidosis: nervous system
- Ocular sarcoidosis: eyes and areas around them
- Renal sarcoidosis: kidneys and urinary system
- Splenic sarcoidosis: the spleen
Sarcoidosis can also develop in the spleen and bone marrow, both of these organs have important roles in blood cell production and filtering old blood cells. Sarcoidosis inflammation can affect these functions, resulting in low red blood cells, anemia, or other atypical blood counts.
The following sections provide more detail, including the symptoms for each type of sarcoidosis.
Pulmonary sarcoidosis affects the lungs. It is the most common type of sarcoidosis. Pulmonary veins and arteries may also be involved. About 90% of people with sarcoidosis have pulmonary sarcoidosis.
Lung symptoms of pulmonary sarcoidosis
Symptoms of pulmonary sarcoidosis include:
Cardiac sarcoidosis affects the heart. About 10% of people with sarcoidosis have cardiac sarcoidosis, but only 2–5% of those people will experience cardiac symptoms. Cardiac sarcoidosis is the second leading cause of death from sarcoidosis. It is also less common and often treatable when caught early.
Heart symptoms of cardiac sarcoidosis
Early on, cardiac sarcoidosis may be asymptomatic. When present, symptoms of cardiac sarcoidosis include:
Cardiac sarcoidosis can lead to other conditions affecting the heart, including:
- cardiomyopathy, a condition in which the heart enlarges or becomes ridged
- cor pulmonale, a condition in which the right side of the heart enlarges
- dysrhythmia, or a change in the electrical function of the heart
In rare cases, cardiac sarcoidosis can cause sudden death.
Because cardiac sarcoidosis is often asymptomatic, doctors recommend that anyone diagnosed with sarcoidosis undergo regular screenings to monitor heart health.
Sarcoidosis that affects the skin occurs in about 33% of sarcoidosis cases.
Skin symptoms of cutaneous sarcoidosis
Symptoms of cutaneous sarcoidosis include:
- erythema nodosum, red or discolored skin patches commonly on lower extremities
- nodules and plaques on the shins
- lupus pernio, purple or discolored marks on the face, neck, and ears
- skin changes can be swollen and painful
- hair loss
- joint pain and swelling
Sarcoidosis can affect any part of the gastrointestinal tract. It is very rare, occurring in less than 1% of people with sarcoidosis. The stomach is most commonly affected.
Symptoms of gastrointestinal sarcoidosis may include:
Hepatic sarcoidosis is sarcoidosis that affects the liver, it is often asymptomatic. Granulomatous hepatitis is another name for this type of sarcoidosis. Rates of hepatic sarcoidosis range from 50–70% of people with sarcoidosis.
Liver symptoms of hepatic sarcoidosis
Granulomatous hepatitis is often asymptomatic, but when symptoms are present they may include:
- abdominal pain and tenderness
- right upper quadrant pain
- unexplained fever
- yellow skin and eyes, known as jaundice, and other hepatomegaly, enlarged liver symptoms
Musculoskeletal sarcoidosis is a rare type of sarcoidosis that affects bones, joints, and muscles. The rate of sarcoidosis affecting joints is 25–50% and muscles is 50–80%.
Musculoskeletal sarcoidosis is often asymptomatic. Only about 1% of cases experience symptoms.
Joint and muscle symptoms of musculoskeletal sarcoidosis
Symptoms of musculoskeletal sarcoidosis may include:
- muscle weakness with joint pain
- joint swelling
- limited mobility
- ankle, knee, wrist, and elbow arthritis
Neurosarcoidosis affects the nervous system, including nerves and the brain, particularly the areas of the brain that produce hormones. About 5–10% of sarcoidosis cases involve neurosarcoidosis, and about half of those are in people with sarcoidosis elsewhere in the body.
Neurological symptoms of neurosarcoidosis
Symptoms depend on where the granulomas develop in the nervous system. Symptoms of neurosarcoidosis may include:
- a sensation of burning pain
- headaches, lightheadedness
- muscle pain or weakness
- numbness and tingling sensations, including peripheral neuropathy
- sensitivity to touch
- facial muscle weakness or paralysis
Eye symptoms of ocular sarcoidosis
Symptoms of ocular sarcoidosis include:
- acute anterior uveitis, inflammation in the eye that causes blurred vision, excessive tears, and sensitivity to light
- loss of vision or blindness
- small, tan, or yellow cysts in the lower area of the eye
- dry eye
Symptoms of renal sarcoidosis
Renal sarcoidosis symptoms are similar to chronic kidney disease or interstitial nephritis. Symptoms may include:
- blood in urine
- change in urine output, either increase or decrease
- swollen feet, ankles, or hands due to water retention
- rash or itchy skin
Splenic sarcoidosis affects the spleen. It affects less than 10% of people with sarcoidosis.
When symptoms are present, they may include:
- upper left quadrant pain, such as under the ribs
- purpura, easy or excessive bruising or bleeding
- petechiae, red pinpoint rash caused by bleeding under the skin
- blood in urine
- bloody stool
Sarcoidosis stages simply describe the location of granulomas, the atypical clumps of immune cells, and other tissues. Stages do not denote disease progression as other disease stages do.
Although there are many possible organs that sarcoidosis affects, doctors only use staging when evaluating sarcoidosis in the lungs.
Using chest X-rays and possibly other imaging scans, doctors diagnose pulmonary sarcoidosis in these stages:
- Stage 0: A usual chest X-ray shows no sign of granulomas.
- Stage 1: Granulomas are only in the lymph nodes.
- Stage 2: Granulomas are in the lymph nodes and lung tissue.
- Stage 3: Only the lungs show the presence of granulomas.
- Stage 4: Scarring develops in lung tissue, and damage is irreversible.
Your doctor will discuss your staging with you and what it means for your overall treatment plan.
Although the cause of sarcoidosis is not known, research suggests it may be due to an immune response or sensitivity to certain substances.
It also seems to have a genetic component, meaning it tends to run in families. Sarcoidosis is not an infectious disease.
A number of factors may increase the risk of developing sarcoidosis. Not all people with risk factors will get sarcoidosis. Some risk factors for sarcoidosis include exposure to:
- materials for gardening, building, or hardware
- insecticides, pesticides, mold, or agricultural dust
- smoke and fumes from fire
Sarcoidosis tends to be more common in people who:
- have a family history of sarcoidosis
- are female
- live with other medical conditions such as lymphoma, asthma, or allergies
Because the exact cause of sarcoidosis is not known, there is no definitive way to prevent the condition from developing.
If you have a family history of sarcoidosis or other risk factors, such as chronic exposure to chemicals or airborne irritants, talk with your doctor about ways you can help manage your risk.
Doctors diagnose sarcoidosis through a physical exam, medical history, and image tests. These tests include:
- X-ray: X-rays can check for the presence of granulomas or other tissue damage in the lungs.
- Imaging scans: A CT or MRI can identify or assess granulomas in other areas of the body.
- Blood tests: Blood tests can rule out other conditions.
- Bronchoscopy: This procedure examines bronchial tubes and internal lung tissue. During a bronchoscopy, a doctor can collect a tissue sample for biopsy. In some cases, a bronchoscopy includes an endobronchial ultrasound to test nearby lymph nodes.
- Biopsy: With a biopsy, experts examine tissue microscopically for the presence of granulomas.
- Electrocardiogram: This procedure tests and records heart rhythm.
- Pulse oximetry: This test measures oxygen levels in the blood as part of evaluating lung function.
- Slit-lamp examination: With a slit-lamp, an eye doctor can check inside the eye for ocular findings related to sarcoidosis.
- Spirometer: This and other breathing tests monitor lung function.
Your doctor will discuss your sarcoidosis diagnosis with you, including staging and other factors, in the context of your medical history. From there, you can work together to determine an effective treatment plan.
The primary goal of treatment for sarcoidosis is to decrease inflammation and reduce the size of granulomas.
Treatment can also help to reduce symptoms, increase organ function, and prevent lung scarring. Treatment will depend on the severity and location of the sarcoidosis.
Treatment options for sarcoidosis include:
- anti-inflammatory drugs, such as hydroxychloroquine (Plaquenil)
- bronchodilators, inhalers that open the breathing passages, such as albuterol (ProAir, Proventil, Ventolin)
- corticosteroids, such as prednisone (Deltasone)
- immunosuppressive agents, such as methotrexate (Trexall)
- tyrosine kinase inhibitors, such as nintedanib (Ofev)
- pain relief medications, such as aspirin and ibuprofen (Advil, Motrin)
- anti-inflammatory diet, which involves limiting ultra-processed foods and including fruits, vegetables, fish, and plant-based proteins
Some lifestyle changes that may also help with treatment include eating a balanced and anti-inflammatory diet, exercising regularly, and getting enough sleep.
Not everyone with sarcoidosis may need treatment. In some cases, granulomas will go away on their own. Other times, people with sarcoidosis do not experience symptoms that require treatment.
Your doctor will discuss your individual case and your specific treatment needs.
Many people with sarcoidosis manage their symptoms effectively with treatment, or, in some cases, can go into remission without any treatment. Some people experience challenges in sleep, breathing, and vision loss.
Sleep disturbances and sarcoidosis
One 2018 study showed that it is common for people with sarcoidosis to experience depression, fatigue, and sleep disturbance — all of which may relate to each other. Depression can lead to fatigue, and sleep disturbance can lead to a lack of rest.
Effects of severe sarcoidosis symptoms
Treatment for sarcoidosis, such as prednisone, can cause swelling that leads to obstructed breathing during sleep. Treatment options can help manage this side effect.
Severe sarcoidosis can lead to lung scarring and vision problems. Symptoms such as shortness of breath, loss of eyesight, or kidney problems can make regular activities difficult. People may experience reduced independence as they become unable to drive or perform other activities of daily living.
Sarcoidosis support groups are available online or in person. They can provide an opportunity to explore resources and connect with other people living with sarcoidosis.
Complications of untreated sarcoidosis can be serious, even life threatening, in some cases. You can help minimize your risk of serious complications by following the treatment plan you and your healthcare professional design specifically for you.
Complications of sarcoidosis include:
- adverse effects of treatment
- organ failure or dysfunction
- physical disability
- lung scarring
- high blood pressure in the lung arteries
Sarcoidosis is inflammation in the body that persists for no known reason. It can lead to clumps of tissue called granulomas, which may cause organ scarring or damage.
Symptoms of sarcoidosis depend on the affected organ. It most often happens in the lungs, which may lead to wheezing, coughing, shortness of breath, and chest pain. Other possible symptoms that affect other body systems include night sweats, fever, weight loss, and seizures.
Most people can manage sarcoidosis by reducing inflammation with medication or lifestyle changes. These include eating a balanced diet and anti-inflammatory diet, exercising regularly, and getting quality sleep. You can avoid complications from sarcoidosis by working with your doctor and following your treatment plan closely.