Sarcoidosis & Your Organs
Beyond the lungs and lymph glands, the body organs or systems affected by sarcoidosis that are associated with the most noticeable symptoms are the skin, eyes, musculoskeletal system, nervous system, heart, liver, and kidneys, in this order. Patients can have symptoms related to the specific organ affected, or can have general symptoms, or can have no symptoms whatsoever (for example, laboratory findings frequently show the liver to be affected by sarcoidosis, yet patients generally do not report any liver-related symptoms).
An individual patient's symptoms can also vary according to how long the illness has been under way, where granulomas are forming, how much tissue has become affected, and whether granuloma formation is still active or has developed into scar.
The lungs are affected in more than 90% of individuals with sarcoidosis. Even in individuals whose disease primarily affects other organs, the lungs are usually affected as well. Shortness of breath, cough, and chest discomfort are the most common lung-related symptoms. Patients may be free of chest symptoms despite an abnormal chest x-ray and biopsy-proven sarcoidosis. Occasionally, patients have chest pain – which is usually described as a vague tightness of the chest – but sometimes the pain can be severe and similar to cardiac pain.
It is thought that sarcoidosis of the lungs begins with alveolitis. Alveolitis is inflammation of the alveoli, which are the tiny sac-like air spaces in the lungs where carbon dioxide and oxygen are exchanged. Alveolitis either clears up by itself or progresses to granuloma formation. Samples of lung tissue may show the presence of granulomas.
Granulomas in the lungs can lead to narrowing of the airways, enlargement of lymph nodes in the chest, and inflammation and scarring (fibrosis) of lung tissue. The scarring causes the lung tissue to stiffen and destroys the air sacs, making it more difficult to breathe.
About 25% of patients with sarcoidosis develop at least one skin symptom. Tender, painful, reddish bumps or patches on the skin (erythema nodosum) – usually on the shins – accompanied by swollen and painful joints are common. Lupus pernio (a chronic skin condition marked by purple-colored lesions on the cheeks, lips, nose, and ears) is common in older African-Americans and West Indian women with long-standing disease.
Other skin signs in patients with long-term disease include plaques, patches (with and without color), nodules, and hair loss. The range in appearance of skin-related lesions – from subtle, painless rashes to deep scars – often correlates with the severity of sarcoidosis involving the internal organs. The skin changes can be visible or under the skin.
About 25% of people with sarcoidosis have eye symptoms. Inflammation of almost any part of the eye can occur--this includes the membranes of the eyelids, cornea, outer coat of the eyeball (sclera), iris, retina, and lens. The most common eye-related symptom is acute anterior uveitis (inflammation of a layer of the eye), which results in the rapid onset of blurred vision, teary eyes, and light sensitivity. In long-standing disease, glaucoma, cataracts, and blindness can occur. Dry eyes are very frequent in long-standing sarcoidosis, even when there is no remaining inflammation. They can be treated with eye drops.
Because some sarcoid-related eye problems do not cause symptoms, it is important that all patients with sarcoidosis have at least yearly appointments with an ophthalmologist.
Your musculoskeletal system
Approximately 10% to 15% of patients may have bone and muscle symptoms, resulting in arthritis, changes in bone structure, or muscle discomfort and pain.
Your nervous system
Neurologic disease occurs in 5% to 10% of patients, often without symptoms in other organs. Symptoms of neurologic involvement include headaches, meningitis, seizures, and nerve tissue degeneration or inflammation – which results in muscle weakness, pain, and numbing or tingling sensations in the face, arms, and legs.
A more recently-discovered type of neurosarcoidosis is small fiber neuropathy (SFN). SFN causes a loss of some types of nerve fibers and requires specialized testing to identify it. Patients with SFN often note burning pain, sensitivity to touch, palpitations, sweating, flushing, light-headedness, gastrointestinal difficulties, and sexual dysfunction.
Heart disease is present in 28% of patients with sarcoidosis, although only about 5% of patients report having any heart-related symptoms. Any part of the heart's structure may be affected by granuloma formation. The most frequently diagnosed heart problems include chest pain, cor pulmonale (an enlargement of the right side of the heart that results from disease in the lungs or its blood vessels), cardiomyopathy (disease of the heart muscle itself), and abnormalities in the heart's electrical system, which can result in heart block, dysrhythmias, and sudden death. It is vital to notify your doctor immediately if you start to develop palpitations or dizzy spells, as this may be the first sign of cardiac involvement. Everyone diagnosed with sarcoidosis should have a baseline EKG (heart tracing).
Granulomas are present in the liver in 50% to 80% of patients with sarcoidosis. However, patients usually do not notice the symptoms due to liver involvement. Rarely, liver disease can progress to hypertension in the liver (called portal hypertension) or cirrhosis (a disease causing widespread disruption of liver function).
Your renal and endocrine system
Abnormalities can occur in the way the body handles calcium. For example, hypercalcemia (an excess of calcium in the blood) occurs in 2% to 10% of patients. Hypercalciuria (an excess amount of calcium in the urine) occurs in up to 21% of patients. Kidney stone formation, damage to the structure of the kidney itself, and kidney failure may also occur. Another endocrine abnormality seen in sarcoidosis is hypopituitarism. The pituitary gland is at the base of the brain and secretes eight different hormones. The signs and symptoms of hypopituitarism vary, depending on which hormones are undersecreted. Occasionally, there is decreased secretion of all the hormones and this is called panhypopituitarism. Diabetes can occur as a complication of sarcoidosis therapy.
Your reproductive system
Sarcoidosis can affect the male reproductive system, particularly the testes, and may cause male infertility and erectile dysfunction. The disease rarely affects the female reproductive system. Sarcoidosis does not increase the incidence of fetal or maternal complications during pregnancy, unless it has caused severe impairment of the heart or lungs. However, the disease may worsen after childbirth.
Your other organs
Cytopenias (deficiencies in the amounts of certain blood cells) are the most common "miscellaneous" symptom. Involvement of the spleen or bone marrow may lead to anemia and other blood abnormalities. These conditions usually are not of clinical significance. Bone thinning (osteopenia) is also common in sarcoidosis, as a result of the disease or as a side effect of prednisone therapy.
Some very common conditions seen in those with sarcoidosis are depression, fatigue, and obstructive sleep apnea. Often, these are the most significant problems affecting the quality of life. Depression may occur in up to 2/3 of patients with sarcoidosis, and can cause much of the fatigue that people with sarcoidosis experience. Sleep apnea is suspected in individuals with fatigue, excessive daytime sleepiness, or an unrefreshed feeling on awakening in the morning. Most individuals snore, or experience episodes of choking or gasping at night. Sarcoidosis of the sinuses or nose, weight gain from steroids, and lupus pernio are three factors that increase the chances for obstructive sleep apnea. If your doctor suspects sleep apnea, it may be diagnosed by overnight monitoring in a sleep lab. This sleep test is called a polysomnogram.
- Culver DA. Sarcoidosis. In: Carey WD, ed. Cleveland Clinic: Current Clinical Medicine 2010. 2nd ed. Philadelphia, Pa: Saunders Elsevier; 2010:section 12.
- Culver DA, Thomassen MJ, Kavuru MS. Pulmonary sarcoidosis: new genetic clues and ongoing treatment controversies. Cleveland Clinic Journal of Medicine 2004; 71(2):88
- National Heart, Lung, and Blood Institute. What Is Sarcoidosis? Accessed 2/13/2015.
- Weinberger SE. Sarcoidosis. Goldman L, Ausiello D. Cecil Textbook of Medicine. 23rd ed. Philadelphia, Pa:Saunders Elsevier; 2007:chap 95.
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This information is provided by the Cleveland Clinic and is not intended to replace the medical advice of your doctor or health care provider. Please consult your health care provider for advice about a specific medical condition. This document was last reviewed on: 2/4/2015...#11865