Sarcoidosis is an inflammatory disease in which swollen, red lumps develop in the organs, most commonly in the lungs or on the skin. Symptoms can vary depending on which organs are affected and may include small bumps on the skin, trouble breathing, red eyes, and weakness or numbness in the body. While there currently is no cure for sarcoidosis, most people report that their symptoms fade with time.
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What Is Sarcoidosis?
Sarcoidosis is an inflammatory condition in which tiny clusters of immune system cells form lumps in the body called granulomas. These red, swollen granulomas can occur anywhere in the body but are mostly found in the eyes, lungs, heart, skin, and lymph nodes in the chest.
Sarcoidosis can occur anytime your body’s immune system reacts to bacteria, chemicals, or viruses by quickly building clumps of cells or tissues in various organs.
If left untreated or if they don’t go away on their own, these tissues can cause permanent scarring or prevent the organ from performing properly.
Because this disease can affect different body parts, every case is unique and should be treated with customized care.
How common is sarcoidosis?
Sarcoidosis is a rare disease. The Foundation for Sarcoidosis Research estimates that about 150,000 to 200,000 people have sarcoidosis in the United States, with about 27,000 new cases diagnosed each year.
What causes sarcoidosis?
Doctors don’t know exactly what causes sarcoidosis, but they believe multiple factors are at play, including:
- Bacteria, chemicals, dust, or viruses entering the body.
- Environmental factors.
- Genetics and gene changes.
Because experts are still unsure about the origins of the disease, it’s important to understand the risk factors, complications, and symptoms so you can contact your health care provider to receive proper treatment.
Sarcoidosis risk factors
While the exact cause of sarcoidosis is not known, certain factors may put some populations at higher risk of developing it, including people who:
- Are age 55 or older.
- Are of African or Scandinavian descent.
- Have a family history of the disease.
- Take medications to treat autoimmune diseases, cancer, or HIV.
- Work with chemical substances, insecticides, or mold.
Doctors are also exploring sarcoidosis and its effects on autoimmune responses, but it is currently not categorized as an autoimmune disease.
Complications of sarcoidosis
If left undiagnosed or untreated, sarcoidosis can become more severe, leading to permanent scarring at the sites of granulomas and/or organ failure.
Other complications of sarcoidosis include:
- Atypical heartbeat.
- Cataracts or retinal damage.
- Facial paralysis.
- Glaucoma.
- Lung infection.
- Kidney failure.
- Male infertility or trouble conceiving (if sarcoidosis is found in the testicles).
- Nervous system complications.
In very severe cases, untreated sarcoidosis can lead to permanent heart and lung damage.
What Are the Signs and Symptoms of Sarcoidosis?
The signs and symptoms of sarcoidosis depend on the part of the body affected. For some people, symptoms may begin suddenly and then fade after a few days. For others, symptoms begin gradually and continue for years.
General sarcoidosis symptoms can include:
- Coughing.
- Depression.
- Fatigue.
- Feeling out of breath.
- Fever.
- Night sweats.
- Nosebleeds.
- Swollen glands in the chest, neck, armpits, or groin.
- Painful bones, joints, or muscles.
- Weakness in the arms, face, or legs.
- Weight loss.
Sarcoidosis commonly affects the lungs, which may cause:
- Chest pain.
- Coughing.
- Shortness of breath.
- Wheezing.
If sarcoidosis is in the heart, you may see the above symptoms as well as:
- A rapid or fluttering heartbeat.
- Fainting.
- Swelling.
For sarcoidosis symptoms of the skin, you may notice:
- Hair loss.
- Growths under the skin, typically around scarred areas.
- Open sores or skin lesions on the face and ears.
- Rashes of small, itchy bumps.
- Raised scars.
If sarcoidosis has impacted the eyes, symptoms can include:
- Burning sensation in the eyes.
- Discharge from eyes.
- Dry eyes.
- Eye pain.
- Itchy eyes.
- Severe redness.
- Sensitivity to light.
- Vision loss.
Sarcoidosis can also affect the nervous system, which can cause:
- Confusion.
- Dizziness.
- Headaches or migraines.
- Seizures.
- Vision changes.
- Weakness, numbness, or tingling in the nerves.
When should I see a doctor about my sarcoidosis symptoms?
If you are experiencing any of the above symptoms, talk with your primary care provider as soon as possible to ensure proper diagnosis and treatment.
How Do You Diagnose Sarcoidosis?
Because sarcoidosis has many symptoms that affect different body parts, it can be challenging to diagnose. There is no official test to diagnose sarcoidosis, so your doctor will run a series of tests. Here’s what you should expect.
Tests used to diagnose sarcoidosis
First, your doctor will want to know your medical and family history and perform a physical evaluation that includes the areas affected by the disease.
Some of the tests and procedures you may be given include:
- Blood tests – To detect signs of inflammation, including one looking for an angiotensin-converting enzyme (ACE) marker, which, when higher than normal, may indicate sarcoidosis.
- Eye exam – To check if vision has been affected.
- Echocardiogram – To check for any heart involvement.
- Imaging – Including a chest x-ray, chest CT scan, or PET CT scan to look for inflammation or granulomas, depending on where your symptoms are occurring.
- Lung function test – Breathing test to check your lung capacity or your body’s response to treatment.
- Urine test – To check your overall health.
If any of your imaging shows lymph node involvement or lung spots, you may be sent to a lung specialist or surgeon for a biopsy.
- Biopsy – Tissue sample taken from the affected area for examination under a microscope.
Depending on your symptoms and the areas affected, your doctor may consult specialists to help diagnose sarcoidosis and develop a treatment plan.
How Do You Treat Sarcoidosis?
For many patients, sarcoidosis resolves on its own over time without treatment. For others, sarcoidosis persists and may require treatment.
If your symptoms are mild or you don’t have any, you might not need treatment, but it’s still important to keep seeing a specialist for regular checkups and monitoring. Treatment is necessary when symptoms begin to affect normal organ function or when organs are at risk of failing.
Medications to treat sarcoidosis
Doctors often treat sarcoidosis with medications that slow down the immune system. These drugs can make it easier for you to get infections, so it’s important to talk with your health care provider about the pros and cons of each option.
Some common immunosuppressant medications include:
- Antimalarials — Although primarily used to treat malaria, they can help with sarcoidosis that affects the skin or joints.
- Corticosteroids (like prednisone) — Reduce inflammation by calming the immune system. Long-term use can cause serious side effects, so your doctor may lower your dose gradually once your symptoms improve.
- Corticotropin — Helps your body make natural steroid hormones.
- Methotrexate — Originally used for severe arthritis, this drug also helps control the immune system in sarcoidosis.
- TNF inhibitors — Reduce inflammation and are often used for arthritis.
The main goals of sarcoidosis treatment are to control symptoms, prevent damage to organs, and help you feel better overall. Treatment typically takes six to 24 months for full recovery.
For more chronic cases of sarcoidosis, or if the sarcoidosis in your lungs worsens and turns into pulmonary fibrosis, your doctor may recommend other treatments, such as:
- Breathing medications
- Oxygen therapy
- Pacemaker
- Rehab programs
If the disease becomes very severe, you may be referred for a lung transplant.
Lifestyle changes
Always listen to your doctor’s recommendations regarding living a healthy lifestyle when you have sarcoidosis. Even if you’re not currently experiencing symptoms, it’s important to continue seeing your doctor or specialist at follow-up appointments and maintaining any lifestyle changes that can keep the disease at bay.
Some people’s sarcoidosis symptoms get worse when they’re stressed or sick with another illness. It’s important to take care of yourself even when you’re not having symptoms, but especially when you’re not feeling well, to prevent severe flare-ups.
Other important lifestyle changes you should make:
- Avoid alcohol and smoking cigarettes – Alcohol can damage your liver, especially if you are taking sarcoidosis medications. Smoking can worsen your lung symptoms.
- Develop a support system – Talking with friends and family or seeking counseling or therapy can help improve your mental health.
- Eat a healthy diet – Limit your sugar intake and focus on a whole-food diet that includes fruits, vegetables, whole grains, and protein.
- Manage stress – Stress-reduction techniques can improve your well-being, especially with a chronic condition like sarcoidosis.
- Stick to a sleep schedule – Getting enough sleep every night can help improve inflammation and overall well-being.
- Stay physically active — Finding an exercise routine or sport you enjoy will help strengthen your muscles and boost your mood. Bonus points if you can get active outside!
