Sarcoidosis
What is sarcoidosis?
Sarcoidosis is a condition that causes inflammation in the body. This inflammation can lead to groups of immune cells forming red, swollen lumps called granulomas. These lumps can prevent the affected organ from working properly. Sarcoidosis most often occurs in the lungs and lymph nodes, but it can appear in any organ.
Because sarcoidosis can involve multiple organs, it’s often managed by rheumatologists, who specialize in treating systemic inflammatory diseases. They may work closely with other specialists like pulmonologists, cardiologists, dermatologists, nephrologists, neurologists, and ophthalmologists. At Penn Medicine, our specialists work as a team to diagnose, treat, and manage sarcoidosis. We’re nationally recognized for excellence in treating complex inflammatory conditions.
Organs that sarcoidosis can affect
Sarcoidosis is one condition, but it can involve different organs in the body. The lungs are most commonly affected, but the disease can also appear in the heart, skin, or nervous system, and in other areas. Some people have sarcoidosis in more than one organ at the same time.
Sarcoidosis can affect the lungs. Lung sarcoidosis is a type of interstitial lung disease that may cause shortness of breath, dry cough, chest pain, or fever. In some cases, it gets better on its own. More severe cases can lead to a condition called bronchiectasis or other chronic lung damage.
When sarcoidosis involves the heart muscle it can disrupt normal heart rhythms (arrhythmias). It may cause chest pain, fainting, or shortness of breath. Severe cases can lead to heart failure.
Sarcoidosis may affect the skin. Cutaneous sarcoidosis can cause rashes, bumps, discolored patches, or painful lesions, often on the face, arms, or legs.
Cutaneous sarcoidosis can appear in different ways, including:
- Papular sarcoidosis
- Plaque sarcoidosis
- Nodular sarcoidosis
- Lupus pernio
- Hypopigmented sarcoidosis
- Atrophic and ulcerative sarcoidosis
When sarcoidosis affects the central nervous system, it’s called neurosarcoidosis. It can involve the brain, spinal cord, and optic nerves, and it often affects the cranial and facial nerves, hypothalamus, or pituitary gland. Symptoms may include headaches, weakness, numbness, balance problems, or facial paralysis. Neurosarcoidosis often occurs along with sarcoidosis in other organs like the lungs or skin and can sometimes resemble multiple sclerosis (MS).
Sarcoidosis can affect the liver. While many people have no symptoms, it can sometimes cause abdominal pain, itchy skin, fever, or weight loss. In rare cases, it may lead to liver damage such as fibrosis or cirrhosis.
Sarcoidosis can impact how the kidneys process calcium and other substances. Many people have no symptoms at first. When symptoms do appear, they may include fatigue, weight loss, fever, or changes in urine. Some people may have high calcium levels in the blood (hypercalcemia) or in the urine (hypercalciuria), which can increase the risk of kidney stones or, in rare cases, kidney failure.
When sarcoidosis affects the eyes it can lead to redness, pain, blurred vision, or sensitivity to light. If left untreated, it may cause vision loss.
When sarcoidosis affects the joints, muscles, or bones, it may cause joint pain, swelling, stiffness, or muscle weakness. In rare cases, it can lead to bone loss (osteoporosis).
Sarcoidosis symptoms
Some people with sarcoidosis don’t have any symptoms. When symptoms do appear, they most often affect the lungs and can include hoarseness, wheezing, or a persistent cough.
When other symptoms are present, they may also include:
- Severe fatigue
- Weight loss
- Abdominal pain
- Swollen or tender lymph nodes
- Joint pain
- Skin sores or rashes
- Fever
- Vision problems
- Yellowing of the skin (jaundice)
What causes sarcoidosis?
Experts don’t know why sarcoidosis causes the immune system to overreact, but it’s likely a mix of genetic, environmental, and possibly infectious factors. Some people may inherit gene changes that make them more likely to develop the disease. The condition is more common in people of African or Scandinavian descent, which also suggests a genetic link.
Infections may play a role, as bacteria, viruses, or other microorganisms could trigger the immune system in some people. Exposure to certain environments with dust, mold, or other airborne particles might also increase the risk.
Sarcoidosis diagnosis and testing
To find out if you have sarcoidosis, your care provider will start with a physical exam. Blood and urine tests can check for signs of inflammation and show how well your liver and kidneys are functioning. They may take a tissue sample (biopsy) to look for granulomas. Your provider may also order tests to rule out other conditions or to help show which parts of your body are affected.
Sarcoidosis treatment
Treatment for sarcoidosis typically focuses on relieving symptoms or preventing long-term damage like scarring of the lungs. Steroid medicines are often the first treatment to help reduce inflammation and calm the immune system. Other medications may be used to treat specific symptoms or affected organs. If your symptoms are mild, your doctor may simply monitor your condition with regular checkups. In rare cases where sarcoidosis causes serious organ damage, surgery may be needed.
Expert care for every type of sarcoidosis
Penn Medicine is a national leader in diagnosing, treating, and managing inflammatory diseases like sarcoidosis. Because we treat more cases than most centers, we recognize the patterns, ask the right questions, and often find answers when others can’t.
When your lungs are affected, our rheumatologists work closely with pulmonologists in the interstitial lung disease care program to guide your care. You also have access to advanced research and clinical trials that may lead to newer, more effective treatments. Our goal is to help you feel better, breathe easier, and regain control of your health.
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