Understanding Sarcoidosis: Symptoms, Causes, Diagnosis, and Treatment Options

Sarcoidosis is a rare inflammatory disease that can affect multiple organs in the body, most commonly the lungs and lymph glands in the chest. If you have sarcoidosis, red, swollen lumps called granulomas form in your affected organs. The symptoms of sarcoidosis can range from nonexistent to severe, depending on where the granulomas form.

Sarcoidosis Symptoms

The symptoms of sarcoidosis can vary greatly depending on which organs are involved. Some people may experience sudden symptoms that stop, while others may have no outward symptoms or symptoms that appear slowly and last for a long time. General symptoms of sarcoidosis include:

  • Fever

  • Fatigue

  • Swollen, painful joints

  • Achy or weak muscles

  • Swollen lymph nodes

  • Unexplained weight loss

  • Kidney stones

  • Night sweats

Lung Sarcoidosis Symptoms

The lungs are usually the first area affected by sarcoidosis, with 9 out of 10 people experiencing some type of lung involvement. Symptoms of lung sarcoidosis may include:

  • Coughing

  • Shortness of breath

  • Wheezing

  • Chest pain

Skin Sarcoidosis Symptoms

Sarcoidosis can cause various changes on your skin, nails, and hair. Common symptoms include:

  • Small bumps (papules) on your neck or face

  • Raised patches that can be smooth or scaly

  • Firm bumps and patches

  • Painless or slightly tender lumps under your skin

  • A rash, often on your shins

  • Changes around a tattoo, scar, or body piercing

  • Discolored or deformed nails

Cardiac Sarcoidosis Symptoms

When granulomas grow in your heart tissue, they can affect how your heart works, leading to:

  • Chest pain

  • Shortness of breath

  • Fluttering or irregular heartbeats

  • Fainting

  • Swelling in your legs from excess fluid

  • Heart failure

Eye Sarcoidosis Symptoms

Sarcoidosis can affect your eyes, sometimes without noticeable symptoms. If you do have symptoms, they might include:

  • Blurred vision

  • Eye pain

  • Dry eyes

  • Burning or itching eyes

  • Severe redness

  • Light sensitivity

Sarcoidosis Risk Factors

Sarcoidosis can affect people of any age, race, or gender, but some groups are at higher risk, including:

  • People between the ages of 25 and 40

  • African Americans and people of Scandinavian descent (in the United States)

  • People assigned female at birth

  • Those exposed to certain environmental factors, such as insecticides, molds, or dust

  • People with a family history of sarcoidosis

  • Those taking certain medications, such as drugs used for HIV and cancer

Sarcoidosis Causes

The exact cause of sarcoidosis is unknown, but studies suggest that in some people, the inflammation leading to symptoms may be triggered by an infection or exposure to environmental factors, such as chemicals or dust. Sarcoidosis might also involve autoimmune responses, where your immune system attacks your body's own proteins. While genes may play a role in sarcoidosis, scientists have not yet discovered the specific genes involved.

Sarcoidosis Diagnosis

Diagnosing sarcoidosis can be challenging, as symptoms and test results may mimic those seen in other conditions. Doctors rely on three criteria to diagnose sarcoidosis:

  1. Your symptoms

  2. The presence of granulomas

  3. The lack of other explanations

To diagnose sarcoidosis, your doctor may use various tools, including:

  • Chest X-rays

  • Other imaging tests, such as MRI or ultrasound

  • Biopsies of affected tissues

  • Lab tests of blood and urine

  • Lung function tests

  • Eye exams

  • Heart tests, such as an electrocardiogram (EKG)

  • Neurological tests

  • Tuberculosis skin test

Sarcoidosis Treatment

While there is no cure for sarcoidosis, the disease often gets better on its own over time. Many people with mild symptoms do not require treatment. When needed, treatment can reduce symptoms and prevent organ damage. Treatment options include:

  • Corticosteroids

  • Immunosuppressants

  • Anti-tumor necrosis factor-alpha antibodies (anti-TNF-alpha antibodies)

  • Anti-malarial medications

  • Nonsteroidal anti-inflammatory drugs (NSAIDs)

In addition to medication, some people may benefit from other treatments, such as:

  • Physical therapy

  • Pulmonary rehabilitation

  • Implantation of a cardiac pacemaker or defibrillator

  • Organ transplant (in severe cases)

Living With Sarcoidosis

When living with sarcoidosis, it is essential to follow your doctor's recommendations and report any new or changing symptoms. Lifestyle changes can also help you feel better and limit complications and treatment side effects, such as:

  • Maintaining a healthy diet

  • Avoiding alcohol

  • Not smoking

  • Staying physically active

  • Managing stress

  • Getting enough sleep

  • Seeking support from a counselor or support group

Most people with sarcoidosis will recover from their symptoms, but for some, sarcoidosis can become a chronic condition. By working closely with your healthcare team and making lifestyle changes, you can better manage sarcoidosis and improve your quality of life.

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