How Sarcoidosis Affects the Body

Sarcoidosis is a systemic (whole-body) inflammatory disease that develops when groups of cells in the immune system form clumps called granulomas in various parts of the body.

The condition can affect any organ, but cases are typically found in the lungs. Some cases of sarcoidosis are mild and do not require treatment, but some can be life-threatening and result in permanent organ damage.

This article explains what sarcoidosis is, as well as its symptoms, causes, and complications. It also covers how the condition is diagnosed and treated and how to cope if you're living with it.

What Is Sarcoidosis?

Sarcoidosis is a disease in which the immune system overreacts, causing while blood cells in the body to form clusters of inflamed tissue, or granulomas.

Granulomas most commonly affect the lungs and lymph nodes, but sarcoidosis can affect any organ including the eyes, skin, heart and nervous system.

Sarcoidosis is a rare disease. Research estimates that there are fewer than 200,000 cases each year in the United States.

The incidence of the disease is much higher among African Americans compared with Caucasians, and African Americans are more likely to have a more severe form of sarcoidosis. In severe cases, sarcoidosis can be life-threatening.

Sarcoidosis Symptoms

There are nine types of sarcoidosis, each affecting a different part of the body.

The symptoms of sarcoidosis will differ depending on where in the body granulomas have formed, but all forms of the disease can present with similar symptoms. Sometimes people with the condition will be asymptomatic, making sarcoidosis hard to diagnose.

General Symptoms

Lung Symptoms of Pulmonary Sarcoidosis - Illustration by Michela Buttignol

Verywell / Michela Buttignol

The general symptoms of sarcoidosis are nonspecific and can sometimes be confused with those of other conditions. The most common initial symptoms of sarcoidosis include:

  • Fatigue
  • Swollen lymph nodes
  • Weight loss
  • Joint pain and swelling

Lung Symptoms

The symptoms of pulmonary sarcoidosis will not appear in everyone with the condition and will range in severity depending on the severity of the disease. The most common symptoms include:

  • Shortness of breath that worsens with activity
  • Persistent dry cough
  • Chest pain
  • Wheezing

Other symptoms that aren’t related to the lungs but can appear in pulmonary sarcoidosis include:

  • Fatigue
  • Fever
  • Night sweats
  • Joint and bone pain
  • Skin rash, new lumps, or pigmentation changes in the face, arms, or shins
  • Weight loss
  • Swollen lymph nodes
  • Eye inflammation that presents with pain, burning, blurred vision, and light sensitivity

Sarcoidosis affects the lungs in 90% of all cases. Around 10% to 20% of people with sarcoidosis will develop treatment-resistant pulmonary disease like pulmonary fibrosis and pulmonary hypertension, which are the leading cause of death from sarcoidosis.


Liver Symptoms

Hepatic sarcoidosis occurs in the liver. The liver can become enlarged, and people with this type of sarcoidosis will have abnormal liver tests or cirrhosis.

Renal Symptoms

When granulomas form in the kidneys, it can lead to:

Cardiac Symptoms

When granulomas form in the heart, it is called cardiac sarcoidosis. Cardiac sarcoidosis is the second leading cause of death from sarcoidosis, which is usually caused by heart block or ventricular arrhythmia.

The main symptoms of cardiac sarcoidosis include:

Eye Symptoms

Ocular/eye sarcoidosis can lead to the following symptoms:

Ocular sarcoidosis can lead to uveitis, which is inflammation of the eye that can cause vision loss and eye pain.

Skin Symptoms

The skin symptoms of sarcoidosis include:

  • Tender or painful skin
  • Reddish patches or bumps
  • Swelling and pain in the joints
  • Purple lesions on the cheeks, lips, nose, and ears known as Lupus pernio
  • Plaques or patches without color
  • Skin nodules
  • Hair loss
sarcoid nodules

DermNet NZ

Neurosarcoidosis Symptoms

This type of sarcoidosis is chronic and affects the central nervous system, including the brain, spinal cord, and optic nerve. Symptoms include:

  • Weakness of the facial muscles on one side of the face (Bell’s palsy)
  • Vision loss
  • Hearing loss

Musculoskeletal Symptoms

It is rare for sarcoidosis to affect the musculoskeletal system, but when it does it can lead to:

  • Inflammatory arthritis
  • Soft tissue swelling
  • Bone loss

Spleen and Bone Marrow Symptoms

When sarcoidosis affects the spleen and bone marrow, it can lead to health issues like anemia and leukopenia.

Stages of Sarcoidisis

Based on a chest X-ray, sarcoidosis in the lungs is assigned a "Scadding stage" ranging from 0 to 4. The location of the granulomas in the lungs and lymph nodes are used to predict the chance of the disease resolving on its own, with lower stages being more likely to not need treatment.

Symptoms can be serious at any stage. Patients at any stage can experience involvement of other organs.

  • Stage 0: X-rays do not show sarcoidosis in the lungs or lymph nodes.
  • Stage 1: There is enlargement of lymph nodes in the center of the chest from granulomas. This stage often has no symptoms and frequently resolves on its own without treatment.
  • Stage 2: There is enlargement of lymph nodes in the center of the chest as well as nodules in the lungs from granulomas.
  • Stage 3: Granulomas appear in the lung tissue
  • Stage 4: Permanent scarring of the lung tissue is present (known as pulmonary fibrosis). This indicates irreversible damage and is the most severe form of lung sarcoidosis.

Causes

Although there is no known cause for any type of sarcoidosis, it is thought that both genetics and environmental factors play a role in its development. It is suggested that when someone whose genes make them more prone to developing sarcoidosis is exposed to a trigger such as an infection or environmental contaminant, their immune system can overreact and trigger the disease.

Some studies have found antibodies against human proteins at increased rates in some patients with sarcoidosis compared to others with and without sarcoidosis.

The cells from some people with sarcoidosis also demonstrate an immune response to some of their own proteins, similar to autoimmune diseases. The exact role of autoimmunity in sarcoidosis is not clear yet.

Another theory suggests that sarcoidosis may be caused by a bacterial infection. The research behind this theory determined that the majority of samples taken from people with the disease were found to contain the Propionibacterium acnes bacteria. Viruses and chemicals may also trigger the disease.

Risk Factors

Certain factors may lead to a higher risk of developing sarcoidosis, including:

  • Working in moldy or dusty environments
  • Being of African or Scandinavian descent
  • Female sex
  • Family history of sarcoidosis
  • Age (between 20 and 40 years old)

Diagnosis

Diagnosing sarcoidosis is often challenging because there is no single blood or imaging test that can confirm the diagnosis.

Instead, the diagnosis of sarcoidosis is based on four main factors:

  • A detailed medical history and complete physical exam
  • Imaging and other diagnostic tests
  • A sample (biopsy) of affected tissue
  • Diagnostic studies that rule out potential diseases that mimic sarcoidosis

Given that sarcoidosis may not present with symptoms, the disease is sometimes discovered incidentally when a person has a physical exam or a chest X-ray for some other reason.

Physical Exam

During the medical history, a healthcare provider may suspect sarcoidosis if a patient's main symptoms are lung-related and accompanied by constitutional symptoms, like fever.

In addition, a patient's age and race can provide a clue to the potential diagnosis.

When it comes to the physical exam, signs of sarcoidosis are often subtle or nonspecific, such as wheezing heard in the lungs.

That said, in some cases, the physical exam findings are more obvious. And if they are found in combination (for example, the eruption of an erythema nodosum rash, along with a fever and multiple joint pains), the diagnosis of sarcoidosis becomes more evident.

Medical Tests

A variety of imaging and other tests are usually performed to help make the diagnosis of sarcoidosis.

These tests often include the following:

sarcoidosis x ray
 Verywell / Gary Ferster

Biopsy

During a biopsy, a small sample of tissue is removed from an organ that is affected by sarcoidosis. A biopsy may be performed on the lung or other affected organ or tissue, like a lymph node, area of skin, or enlarged parotid gland. Sometimes, two different organs are biopsied to help make the diagnosis of sarcoidosis.

Once the tissue sample is removed, it is examined under a microscope for the characteristic finding of sarcoidosis—a granuloma.

Differential Diagnoses

Since several other diseases can mimic the symptoms and signs of sarcoidosis, your healthcare provider will evaluate these alternative diagnoses:

Treating Sarcoidosis

There is no cure for sarcoidosis, but the condition sometimes resolves without medical intervention. For those who do require treatment, the severity of symptoms will be the deciding factor in the type of treatment used.  

Medications

If a case of sarcoidosis is particularly severe, medication will likely be prescribed to help combat symptoms and slow the progression of the disease. Some medications used in the treatment of sarcoidosis include:

  • Corticosteroids or prednisone: Helps slow down the immune system thus reducing inflammation 
  • Methotrexate: Suppresses the immune system
  • Antimalarials: Help with skin and joint symptoms
  • TNF inhibitors: Help with inflammation
  • Corticotropin: Helps the body produce natural steroid hormones
  • Non-steroidal anti-inflammatory drugs (NSAIDs): Help reduce inflammation and relieve arthritic symptoms

Other Treatments

Depending on what part of the body is affected, the treatments may vary. Some possible treatments for more progressed stages of sarcoidosis include:

  • Physical rehabilitation to help restore lung function and alleviate fatigue
  • Physical therapy to help improve muscle and slow joint damage
  • Organ transplantation if the organ affected is severely damaged
  • Eye care if the eyes are affected

Managing Sarcoidosis

At-Home Care

Lifestyle modifications can help you stay as healthy as possible with sarcoidosis. These include:

  • Eating a healthy diet
  • Avoiding alcohol
  • Quitting smoking
  • Exercising (Check with your doctor before beginning any type of exercise program.)

Ongoing Monitoring

It's important to stay on top of any new symptoms that may develop. Likewise, note if your disease seems to go into remission.

Stay in touch with your healthcare provider and keep them informed. This way, if your disease worsens, they can come up with appropriate treatment. If it goes into remission, your provider may want to see how you do if treatment is paused or stopped.

Prognosis

The prognosis for people with sarcoidosis differs depending on symptoms, the level of damage done to the body, and the type of sarcoidosis they have.

For many, recovery typically occurs on its own without medical intervention. In about 60% of cases, the granulomas will disappear over two to five years and the patient will recover. 

In rare cases, the condition can lead to death if the body is damaged irreparably (and there is severe scarring of the lungs, for example). However, that only occurs in roughly 1% to 8% of sarcoidosis cases.

If no treatment is required, you should see your healthcare provider for regular check-ups to ensure that it is monitored accordingly and isn’t progressing.

Coping

Sarcoidosis comes with health challenges that can be difficult to cope with. A support group can be a big help in coping with the condition and the effects on your life. The Foundation for Sarcoidosis Research has an online database that can help connect people with sarcoidosis with a support group in their local area.

The Lung Helpline (1-800-LUNGUSA) of the American Lung Association is staffed by experienced registered nurses, respiratory therapists, and certified tobacco treatment specialists who can answer any questions related to the condition. 

Managing a chronic condition like sarcoidosis can be physically and mentally taxing, so self-care is an important component of coping with the disease. Consider discussing symptoms with loved ones and finding creative outlets for stress like painting and journaling.

Summary

Sarcoidosis is an inflammatory disease that causes white blood cells to form into clusters called granulomas. The disease most commonly affects the lungs, but can also affect other organs, such as the liver, kidneys, eyes, and heart.

Symptoms vary according to which organ is affected, and the disease can range from mild to potentially life-threatening. Some cases of sarcoidosis may resolve on their own, while others will require ongoing treatment.

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Verywell Health uses only high-quality sources, including peer-reviewed studies, to support the facts within our articles. Read our editorial process to learn more about how we fact-check and keep our content accurate, reliable, and trustworthy.
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Additional Reading

By Angelica Bottaro
Angelica Bottaro is a professional freelance writer with over 5 years of experience. She has been educated in both psychology and journalism, and her dual education has given her the research and writing skills needed to deliver sound and engaging content in the health space.