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:

Your symptoms
The presence of granulomas
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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