Rare Diseases How Sarcoidosis Affects the Body By Angelica Bottaro Updated on August 04, 2023 Medically reviewed by Reza Samad, MD Print Table of Contents View All Table of Contents What Is Sarcoidosis? Symptoms Stages Causes Diagnosis Treatment Disease Management Prognosis Coping 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 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: FatigueSwollen lymph nodesWeight lossJoint pain and swelling Granuloma Symptoms and Related Conditions 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 activityPersistent dry coughChest painWheezing Other symptoms that aren’t related to the lungs but can appear in pulmonary sarcoidosis include: FatigueFeverNight sweatsJoint and bone painSkin rash, new lumps, or pigmentation changes in the face, arms, or shinsWeight lossSwollen lymph nodesEye 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: Renal dysfunction Kidney stones made up of calcium Kidney failure (in severe cases). kidney stones made up of calcium 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: Heart block Chest pain Enlargement of the right side of the heart Cardiomyopathy Dysrhythmias Palpitations Dizzy spells Arrhythmias Sudden death Eye Symptoms Ocular/eye sarcoidosis can lead to the following symptoms: Blurred vision Teary eyes Light sensitivity Glaucoma Cataracts Blindness Dry eyes Ocular sarcoidosis can lead to uveitis, which is inflammation of the eye that can cause vision loss and eye pain. Difficulty Breathing: Is It Asthma or Something Else? Skin Symptoms The skin symptoms of sarcoidosis include: Tender or painful skinReddish patches or bumpsSwelling and pain in the jointsPurple lesions on the cheeks, lips, nose, and ears known as Lupus pernioPlaques or patches without colorSkin nodulesHair loss 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 arthritisSoft tissue swellingBone 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 tissueStage 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. Granuloma Symptoms and Related Conditions Risk Factors Certain factors may lead to a higher risk of developing sarcoidosis, including: Working in moldy or dusty environmentsBeing of African or Scandinavian descentFemale sexFamily history of sarcoidosisAge (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 examImaging and other diagnostic testsA sample (biopsy) of affected tissueDiagnostic 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: Chest X-ray: The two classic findings seen on a chest X-ray of a patient with sarcoidosis are enlargement of the lymph nodes on both sides of the chest (bilateral hilar lymphadenopathy) and pulmonary (lung) infiltrates High resolution computed tomography (HRCT) scan of the chest Pulmonary function tests (PFTs) Electrocardiogram (ECG) Various blood tests: Angiotensin-converting enzyme (ACE) level, complete blood count (CBC), and comprehensive metabolic panel (CMP), to name a few Urinalysis and urine calcium level Eye exam 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: Infections, like tuberculosis, histoplasmosis, or human immunodeficiency virus Cancer, like lymphoma Drug-induced hypersensitivity Foreign body granulomatosis Hypersensitivity pneumonitis Pneumoconiosis (e.g., aluminum or beryllium) Vasculitis, like Churg-Strauss syndrome or granulomatosis with polyangiitis (formally called Wegener granulomatosis) 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 systemAntimalarials: Help with skin and joint symptomsTNF inhibitors: Help with inflammationCorticotropin: Helps the body produce natural steroid hormonesNon-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 fatiguePhysical therapy to help improve muscle and slow joint damageOrgan transplantation if the organ affected is severely damagedEye 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 dietAvoiding alcoholQuitting smokingExercising (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. 20 Sources 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. American Lung Association. Learn about sarcoidosis. Gerke AK, Judson MA, Cozier YC, Culver DA, Koth LL. Disease burden and variability in sarcoidosis. Ann Am Thorac Soc. 14(Supplement_6):S421-S428. doi:10.1513/AnnalsATS.201707-564OT American Lung Association. Learn about sarcoidosis. National Heart, Lung, and Blood Association. Sarcoidosis. Johns Hopkins Medicine. Pulmonary sarcoidosis. Michigan Medicine. Sarcoidosis. Tadros M, Forouhar F, Wu GY. Hepatic sarcoidosis. 2013. 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Presenting characteristics as predictors of duration of treatment in sarcoidosis. QJM. 99(5):307-15. doi:10.1093/qjmed/hcl038 Additional Reading Cleveland Clinic. Sarcoidosis Overview: Management and Treatment. 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. See Our Editorial Process Meet Our Medical Expert Board Share Feedback Was this page helpful? Thanks for your feedback! What is your feedback? Other Helpful Report an Error Submit