What is sarcoidosis?
Sarcoidosis is a condition that causes your immune system to overreact and make lumps or nodules called granulomas. Depending on location and size, granulomas can cause mild to severe symptoms or no symptoms at all. In some cases, they can turn into fibrosis, causing permanent lung scarring.
Granulomas can be found almost anywhere in your body, but they’re most commonly found in your lungs or lymph nodes. You may also have noticeable symptoms of granulomas in your skin, eyes or muscles.
What is a granuloma?
A granuloma is an area of inflammation caused by your immune system. It’s made up of a cluster of white blood cells that have been “walled off” from the rest of your body to try to protect you from something your immune system thought was harmful. Granulomas are surrounded by fibrous (dense) tissue, which makes them feel hard and lumpy.
Who does sarcoidosis affect?
While sarcoidosis can affect anyone, it’s more common in Black people than in white people. It also affects those assigned female at birth (AFAB) slightly more than those assigned male at birth (AMAB). Most cases are diagnosed between the ages of 25 and 40.
While you can’t inherit sarcoidosis, you’re at a higher risk of developing it if you have a first-degree biological relative (parent, child or sibling) who has it.
How common is sarcoidosis?
Sarcoidosis is considered a rare disease. There are usually fewer than 200,000 cases of sarcoidosis at any given time in the U.S.
Symptoms and Causes
What are the symptoms of sarcoidosis?
The symptoms of sarcoidosis depend on where in your body granulomas form. Most people with sarcoidosis have lung symptoms, but you can have symptoms in your skin, eyes, joints and almost anywhere else in your body. You may also have general feelings of being unwell or no symptoms at all.
General symptoms of sarcoidosis
- Joint pain.
- Muscle aches or weakness.
- Night sweats.
- Swollen lymph nodes.
- Unexplained weight loss.
- Kidney stones.
Symptoms of sarcoidosis in your lungs
Symptoms of sarcoidosis in your eye
- Blurred vision or loss of vision (optic neuritis).
- Eye pain.
- Red or swollen eyes (uveitis or conjunctivitis).
- Sensitivity to light.
Symptoms of sarcoidosis of your skin
- Growths under your skin around scars or tattoos.
- Light or dark patches of skin.
- Raised, reddish-purple sores or rash across your nose or cheeks (lupus pernio).
- Red, tender bumps on your shins (erythema nodosum).
Symptoms of sarcoidosis of your heart
- Chest pain.
- Fluttering heartbeat (palpitations).
- Irregular heartbeat (arrhythmia).
- Heart failure.
- Shortness of breath.
Symptoms of sarcoidosis of your nervous system
- Increased thirst or amounts of pee (Diabetes insipidus).
- Weak or paralyzed facial muscles (Bell’s palsy).
What are the stages of pulmonary sarcoidosis?
Pulmonary (lung) sarcoidosis is sometimes described in stages called the Siltzbach classification system.
It’s important to know that these stages aren’t necessarily an indicator of severity. You’re not expected to move through each stage. They’re based on your lungs’ appearance on a chest X-ray and mostly describe where the granulomas are located.
Someone with sarcoidosis can move between stages or have granulomas disappear completely. The only stage that’s irreversible is stage four, which is permanent lung damage.
- Stage 0: X-rays don’t show any pulmonary sarcoidosis. Lungs and lymph nodes appear normal on an X-ray.
- Stage 1: Granulomas in your lymph nodes only.
- Stage 2: Granulomas in your lymph nodes and lungs.
- Stage 3: Granulomas in your lungs only.
- Stage 4: X-rays show pulmonary fibrosis, or permanent scarring of your lungs.
What causes sarcoidosis?
Research suggests that a combination of genetics and environmental factors cause sarcoidosis, but its exact cause is unknown. We think certain people are more likely to have their immune system overreact to certain triggers (antigens), like bacteria and viruses. Despite the immune system’s involvement, sarcoidosis isn’t considered an autoimmune disorder.
Since we don’t know for sure which combination of genes and triggers causes sarcoidosis, it’s impossible to predict who will get it.
What is Löfgren syndrome?
Löfgren syndrome is a sudden onset of sarcoidosis defined by a group of symptoms affecting several parts of your body:
- Arthritis in multiple joints.
- Red, tender bumps on your shins (erythema nodosum).
- Swollen lymph nodes in your chest.
Löfgren syndrome usually resolves in six months to two years.
Diagnosis and Tests
How is sarcoidosis diagnosed?
Sarcoidosis is usually diagnosed with a combination of a physical exam, imaging (such as a chest X-ray) and biopsy of suspected granulomas. Because sarcoidosis can look like other conditions, your healthcare provider may perform additional tests to rule out other illnesses.
What tests are used to diagnose sarcoidosis?
Imaging tests and biopsies are the most common ways to diagnose sarcoidosis, but your healthcare provider may order others based on your signs and symptoms.
- Imaging tests use special machines to take pictures of the structures inside of your body. Your healthcare provider may order chest X-rays, CT scans or MRIs.
- Biopsies can be done in many different ways, depending on where your provider suspects you have granulomas. Skin, conjunctiva (eye) and some lymph node biopsies can be non- or minimally invasive.
More involved procedures can examine tissue from your lungs using small tubes, cameras and biopsy equipment passed through your nose, your throat or an incision (small cut). These include:
- Endobronchial ultrasound-guided transbronchial fine needle aspiration (EBUS-TBNA).
- Bronchoscopic transbronchial biopsy.
Other tests for sarcoidosis include:
- Pulmonary function tests: Noninvasive tests that measure how well your lungs work.
- Lab tests: Blood or urine tests are used to see how well your liver, kidneys and other organs work.
- Electrocardiogram (EKG or ECG): A routine office test that checks the electrical activity of your heart.
- Nuclear imaging: PET scans and gallium scans use a small amount of radioactive material injected into a vein to show inflammation in your body.
- Purified protein derivative: A simple skin test that helps establish prior exposure or infection with tuberculosis (TB). This can diagnose or rule out TB, which is sometimes mistaken for sarcoidosis.
- Slit-lamp examination: Your provider looks at the inside of your eye to detect eye-related problems caused by sarcoidosis.
Management and Treatment
How is sarcoidosis treated?
Treatment for sarcoidosis is usually to manage symptoms and prevent organ damage. Since granulomas are areas of inflammation caused by immune cells, sarcoidosis is usually treated with medications that modify or suppress your immune system. Treatment depends on where granulomas are in your body.
There’s no specific cure for sarcoidosis, though it often goes away on its own. If symptoms aren’t bothersome or life-threatening, sarcoidosis sometimes doesn’t need to be treated immediately. You and your healthcare provider will monitor your symptoms instead.
What medications are used to treat sarcoidosis?
Medications to treat sarcoidosis aim to reduce inflammation by modifying or suppressing your immune system. Some commonly used medications in sarcoidosis include:
- Corticosteroids: Corticosteroids, like prednisone and cortisone, are drugs that reduce inflammation in your body. These can either be pills that you swallow, an inhaler that you spray into your mouth or topical creams (applied directly to your skin or eyes).
- Immunosuppressants: Immunosuppressants help stop your immune system from causing organ damage and inflammation. Methotrexate is an immunosuppressant commonly used in sarcoidosis.
- Anti-tumor necrosis factor-alpha antibodies (anti-TNF-alpha antibodies): Anti-TNF-alpha antibodies, like infliximab, target a specific chemical in your immune system to reduce inflammation. These drugs are given by a healthcare provider through an infusion into your vein.
- Nonsteroidal Anti-Inflammatory Drugs (NSAIDs): NSAIDS are medications that can give temporary relief of symptoms caused by inflammation. They aren’t usually prescribed for long-term use.
Complications/side effects of treatment
Corticosteroids can put you at increased risk of getting sick with an infectious disease and can cause a number of side effects, including:
- Excessive weight gain.
- Diabetes in susceptible people.
- High blood pressure.
- Depression and emotional irritability.
- Skin bruising.
For this reason, healthcare providers only recommend using medications to treat sarcoidosis if the benefits outweigh the risks.
How soon after treatment will I feel better?
It can take anywhere from a few weeks to a few months for you to notice symptom improvement after starting treatment for sarcoidosis. Your healthcare provider will monitor you and may perform tests again to see if the treatment is working.
What foods should be avoided with sarcoidosis?
Some research suggests that certain diets reduce inflammation in the body. Eating plant-based foods (like fruits and vegetables), limiting meat and cheese, and avoiding sugar and carbohydrates (like breads) may help improve your sarcoidosis symptoms. Ask your healthcare provider before starting a new diet.
How can I prevent sarcoidosis?
Since we don’t know for sure what causes sarcoidosis, there’s no way to prevent it or reduce your risk of getting it. Taking medications as prescribed by your healthcare provider will reduce your risk of organ damage that granulomas can cause.
Outlook / Prognosis
What is the outlook for sarcoidosis?
The severity of sarcoidosis is different from person to person. For most people, it’s a temporary condition that goes away on its own or with treatment. For some, it’s a chronic illness that causes permanent damage.
About two-thirds of people diagnosed with sarcoidosis will eventually be disease-free (sarcoidosis will go into remission) in two to three years. Löfgren syndrome has a particularly good prognosis, with most cases resolving in six months to two years.
Most people who still have sarcoidosis after three years are likely to have chronic disease. Only about 10% to 20% of those with chronic sarcoidosis will have permanent organ damage. The most common complication of sarcoidosis in the U.S. is lung scarring.
What is the life expectancy of a person with sarcoidosis?
Most people with sarcoidosis can expect to live as long as someone without sarcoidosis. A small percentage (1% to 5%) of sarcoidosis cases are fatal.
How do I take care of myself with sarcoidosis?
The best way to take care of yourself while living with sarcoidosis is to follow the recommendations of your healthcare provider. Monitor your symptoms for changes and take any medications as directed.
When should I see my healthcare provider?
You should call or make an appointment with your healthcare provider if you have new or bothersome symptoms, or if you’re receiving treatment and experiencing worrisome side effects.
What questions should I ask my healthcare provider?
It might be helpful to ask your healthcare provider:
- What are the benefits of treatment vs. monitoring symptoms?
- How long will it be before I can expect symptom improvement?
- How do I know if my treatment’s working?
- Are there any lifestyle changes I should make?
- When should I follow up with you?
A note from Cleveland Clinic
Sarcoidosis is a rare condition with many possible symptoms. Many cases resolve on their own or with treatment, but chronic sarcoidosis can be managed with medications and careful monitoring. It’s important to note that in some cases, it may be beneficial to monitor symptoms without treatment. You and your healthcare provider can make a plan that works for your specific case.
- Cleveland Clinic Respiratory Institute The Sarcoidosis Center of Excellence https://my.clevelandclinic.org/departments/respiratory/depts/sarcoidosis
- Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/
- American Academy of Dermatology https://www.aad.org/
- American Liver Foundation https://liverfoundation.org/
- American Lung Association https://www.lung.org/
- Arthritis Foundation https://www.arthritis.org/
- National Eye Institute https://www.nei.nih.gov/
- National Heart, Lung, and Blood Institute (NHLBI) https://www.nhlbi.nih.gov/
- National Institute of Arthritis and Musculoskeletal and Skin Diseases https://www.niams.nih.gov/
- National Library of Medicine https://www.nlm.nih.gov/
- Ocular Immunology and Uveitis Foundation Massachusetts Eye Research and Surgery Institute https://uveitis.org/
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