Sarcoidosis Treatment Guide

Your sarcoidosis specialist’s guide to diagnosis, treatment, and symptom management.

Topic Guide

What Is Sarcoidosis?

Sarcoidosis Symptoms

Sarcoidosis Causes

Sarcoidosis Diagnosis

Sarcoidosis Treatment

Sarcoidosis Lifestyle

What is Sarcoidosis?

Sarcoidosis is a disease caused by inflammation. Unlike other diseases associated wth inflammation, it’s not considered an autoimmune disease. Patients with sarcoidosis have hyperreactive immune systems that lead to groups of immune system cells forming granulomas (inflamed lumps of tissue) in the organs.

These clusters of white blood cells and tissues form around infections or foreign objects in the body. Sarcoidosis granulomas develop when clusters of inflamed cells accumulate. While granulomas aren’t cancerous or inherently harmful, they can develop in parts of the body that inhibit organ function.

Sarcoidosis is typically diagnosed in people aged 30-40 but can be diagnosed at any age. Sarcoidosis is more commonly diagnosed in women, especially those of African or Scandinavian descent. The disease is considered rare, with around only 200,000 current diagnoses in the United States.

Symptoms of Sarcoidosis

Symptoms of sarcoidosis can vary depending on the location where the granulomas form. Granulomas most often develop in the lungs, lymph nodes, eyes, skin, and heart. However, sarcoidosis granulomas can form throughout the body, including:

  • Liver
  • Intestines (large and small)
  • Stomach
  • Spleen
  • Kidneys
  • Brain and spinal cord
  • Bones, joints, muscles
  • Sinuses
  • Salivary glands
  • Spleen

Symptoms of sarcoidosis vary greatly, but often include several of the following:

  • Shortness of breath
  • Swollen lymph nodes
  • Fatigue
  • Weight loss
  • Cough
  • Wheezing and/or chest pain
  • Eye pain or blurred vision
  • Heart palpitations or fluttering heartbeat
  • Heart arrhythmia (irregular heartbeat)
  • Headaches
  • Bell’s palsy
  • Growths under the skin
  • Patchy, bumpy, or reddish skin

Because symptoms of sarcoidosis are so broad, it’s important to visit your doctor or a rheumatologist if you are experiencing new or unusual symptoms.

What Causes Sarcoidosis?

Sarcoidosis develops when there is an inappropriate immune response. While it’s not known for sure what causes the immune system to attack the body, it’s believed that family history, environmental triggers, and certain medications (mainly some types of HIV medicines) can all play a role.

Research has shown that there is likely a strong genetic component to sarcoidosis. One study published in the American Journal of Respiratory and Critical Care Medicine suggests there is approximately a 66% heritability probability within families with a history of sarcoidosis. Carrying the genetic predisposition for the disease doesn’t guarantee that an individual will develop sarcoidosis.

Some environmental triggers thought to be linked to sarcoidosis include:

  • Heavy metals
  • Pollution, gas, or fumes
  • Certain infectious pathogens and bacteria

More research is needed to fully understand what causes sarcoidosis.

Sarcoidosis Diagnosis

If you are experiencing symptoms of sarcoidosis, your provider will likely conduct a physical exam and order tests that can help rule out other causes of your symptoms. These tests will vary depending on the types of symptoms you are experiencing. Because sarcoidosis can affect many organs throughout the body, your diagnosis journey may differ from others diagnosed with the same disease.

Lab Tests for Sarcoidosis

Lab tests for sarcoidosis may be used to rule out other causes of your symptoms. Bloodwork to measure calcium or white blood count, or a urine test to measure blood in the urine may be ordered by your provider. While bloodwork can point to sarcoidosis, more labs are required to formally diagnose the condition.

Sarcoidosis Imaging Tests

Imaging is typically required to diagnose sarcoidosis. Radiographs, or X-rays, can be used to visualize bones and soft tissues in the body. X-rays can identify the presence of granulomas caused by sarcoidosis. X-rays for sarcoidosis can be used to scan the chest and lungs and typically only take a few minutes.

Sometimes, a CT scan is ordered to examine the lung tissue and lymph nodes. CT scans can offer more detailed images than X-rays if an X-ray isn’t conclusive or clear enough to form a sarcoidosis diagnosis. CT scans take slightly longer to complete than X-rays and you can expect a scan to last between 10-30 minutes.

Echocardiograms are sometimes used for a sarcoidosis diagnosis when heart symptoms are present. An echocardiogram is a type of ultrasound (using sound waves) to capture the heart structure and blood flow.

Physical Examination for Sarcoidosis

Your provider may conduct one or multiple physical examinations in addition to any lab or imaging tests. If you are experiencing eye symptoms, an eye exam may be conducted. Alternatively, a physical examination of the lungs can be conducted with a breathing test.

Breathing tests gauge lung performance, including how much air your lungs can hold.

Sarcoidosis Treatment

Treatment for sarcoidosis will vary depending on the location of the granulomas but will likely consist of a combination of different medications and lifestyle changes.

Sarcoidosis Medications

Common sarcoidosis medications include:

Corticosteroids: Corticosteroids are anti-inflammatory medications that mimic natural hormones in the body produced by the adrenal glands. They are often prescribed to temporarily reduce symptoms in individuals with autoimmune diseases. These may include:

  • Prednisone
  • Prednisolone

Immunosuppressants and Antimalarial Medications: Immunosuppressants work to suppress an overactive immune system to reduce inflammation, while antimalarial medications were originally developed to treat malaria, but have been proven to be effective for some individuals to treat sarcoidosis. Medications may include:

  • Hydroxychloroquine (antimalarial)
  • Cyclosporine (for ocular sarcoidosis)
  • TNF inhibitors (Remicade and Humira)

Lifestyle Adjustments to Treat Sarcoidosis

Your rheumatologist will likely recommend lifestyle changes as an important role in your sarcoidosis treatment plan. Adjustments to diet, exercise habits, and stress reduction techniques have been proven to help minimize inflammation in the body and, therefore may help to improve symptoms along with any prescribed medications.

Sarcoidosis Diet

Following an anti-inflammatory diet, like the Mediterranean diet, can help reduce symptoms of sarcoidosis. Increasing your consumption of leafy green, fibrous fruits, vegetables, and legumes, and healthy fats like salmon and coconut oil can help promote healthier gut bacteria and reduce inflammation.

Sarcoidosis and Exercise

Symptoms of sarcoidosis, including fatigue or reduced lung function, can make exercise challenging. However, physical exercise is still important for patients with sarcoidosis because it increases oxygen to the brain, helps strengthen muscles, and for some, can ultimately reduce feelings of fatigue.

Your rheumatologist may recommend gentle, low-impact exercises for sarcoidosis. These may include:

  • Brisk walking
  • Gentle stretching, yoga, and tai chi
  • Swimming
  • Light weightlifting

Sarcoidosis and Stress

Stress has been linked to increased inflammation in the body that can worsen symptoms of sarcoidosis and autoimmune diseases. It’s important to work to reduce daily stress to help minimize symptoms.

Mindfulness meditation may help some patients lower their stress levels or feel less anxious. Others find journaling and breath exercises help them to reduce stress throughout the day. Your rheumatologist can recommend stress-reducing activities or techniques to help combat stress.

If you suspect that you might have sarcoidosis or are looking for a rheumatologist to treat or manage your sarcoidosis diagnosis, Summit Rheumatology is accepting new patients.

Call (480) 494-2770 or send us a message to schedule an appointment with one of our sarcoidosis specialists who are ready to help you reclaim your health!

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