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Sarcoidosis

Understand this complex disorder that can affect different parts of the body.

What is sarcoidosis?

Sarcoidosis is a rare disease that causes inflammation in many different parts of the body. Clumps of immune cells, called granulomas, build up in various parts of the body, where they can cause damage. These include the lungs, skin, eyes, liver, joints, heart, nervous system, and less often the kidneys and gastrointestinal tract.

Not all people with sarcoidosis have the same symptoms. It might be just one organ, like the lungs or skin, or several organs at a time. In most people, at least the lungs and/or the lymph nodes are affected.

Some people with sarcoidosis have no symptoms at all. (For example, it is discovered accidentally during a chest X-ray for a different problem.) Others may have mild, temporary symptoms. And some have a more severe chronic disease.

It is common for people with sarcoidosis to get better on their own. Treatment is not always necessary.

Most common symptoms

Dr. Rx

There is one form of sarcoidosis that affects 5–10% of people with sarcoidosis called Lofgren’s syndrome. It is commonly a patient younger than 40 years of age who has arthritis in both ankles. Erythema nodosum, which are painful red nodules under the skin, usually on the shins, and symptoms for less than 2 months. It usually goes away on its own without treatment. Or with NSAIDs (non-steroidal anti-inflammatory drugs), such as ibuprofen or naproxen. —Dr. Sara Penn

Many people with sarcoidosis have no symptoms. When there are symptoms, they usually begin between ages 30 and 50 and may be mild or severe.

Like other diseases that cause inflammation throughout the body, symptoms can be very general, such as fatigue, weakness, aching muscles, swollen lymph glands, fever, lack of appetite, and weight loss.

Also, sarcoidosis can affect any organ or organ system. Each of them reacts differently. The most common symptoms for each organ are:

Lungs: By far the most commonly affected, making up 90% of cases.

Liver: (30% to 40% of cases) About 80% of people with liver involvement do not have symptoms.

  • Enlarged liver
  • Finding on blood tests, such as elevated liver enzymes

Skin: (20% to 35% of cases) Many skin findings are possible including

  • Erythema nodosum: red, hot, painful bumps below the skin, usually on the shins.
  • Rashes (erythema multiforme, nummular eczema, and skin plaques) that are circular, raised, red, and/or crusty can appear anywhere on your body. They may be itchy or painful.
  • Lupus pernio: chronic inflammation, swelling, and reddening of the skin on the face.
  • Scars and tattoos are more likely to become sites of sarcoidosis inflammation.

Eyes: (20% to 30%)

  • Redness
  • Dryness
  • Worsening vision
  • Eye pain
  • Growths from the tissue around the eye
  • Protruding eyeballs

Heart: (5% to 25%) Japanese people are more likely to have sarcoidosis in the heart muscle.

  • Shortness of breath
  • Swelling in the legs
  • Arrhythmias (irregular heartbeats) that cause palpitations (fluttering heartbeats) or fainting

Kidneys: (2% to 60%)

  • Kidney stones (sarcoidosis can change how your body metabolizes calcium, which leads to kidney stones)

Muscles and skeleton: (2% to 40%)

  • Arthritis (joint pain) and swelling

Nervous system: (1% to 5%)

  • Nerve pain
  • Partial paralysis

Other symptoms you may have

You might also have more bodywide symptoms, like weight loss, fatigue, fevers, chills, or a loss of appetite.

How do you get sarcoidosis?

It’s not known what causes sarcoidosis. There aren’t any lifestyle choices or pre-existing conditions that make you more likely to get it.

There may be genetic risk factors. The disease might be triggered by other infections. Or by something in the environment.

We do know that certain groups of people are more likely to get the disease. That includes:

  • African-Americans and Scandanavians
  • People in their 30s and 40s
  • Women, especially African-American women

In addition to all the ways sarcoidosis acts differently from person-to-person, it also behaves differently in people of different races and ethnicities. For example, African-Americans tend to have more severe versions of the disease than whites; Japanese people are more likely to have damage to their eyes and heart than people of other nationalities.

Sarcoidosis causes

Pro Tip

I would suggest that anyone diagnosed with sarcoidosis be evaluated at least once by a rheumatologist and an ophthalmologist to check if there are any additional organs involved that may not be initially obvious. —Dr. Penn

Sarcoidosis is an inflammatory disease that occurs when the immune system attacks itself, causing excess inflammation.

Clumps of immune cells called granulomas usually help fight infections in the body. In sarcoidosis, the body makes too many of them. This can lead to scarring of organ tissue, which can interfere with an organ’s structure and function.

What is the life expectancy of a person with sarcoidosis?

In many people, sarcoidosis will go away on its own and never come back.

Less than 5% of people with sarcoidosis die from their disease. Usually, death is because of organ damage or complications of treatment.

People most likely to die from sarcoidosis are those who are older, have extensive pulmonary fibrosis (scarring), pulmonary hypertension, or heart or brain involvement.

Next steps

Pro Tip

Ask your doctor if you should see any other specialists, and who is going to be the “quarterback” of your treatment team. Since the symptoms of sarcoidosis are highly variable, you may see your PCP, or a pulmonologist or rheumatologist. —Dr. Penn

Go to the emergency room if you have:

  • Chest pain
  • Palpitations (fast or irregular heartbeat)
  • New shortness of breath
  • Changes to your vision (especially blindness)
  • New paralysis of part of your body
  • Any other symptoms that are sudden, intense, or alarming

Just as there are many different symptoms possible, there are many ways to diagnose sarcoidosis—and many treatments.

You might be treated by a primary care doctor, a pulmonologist (lung specialist), a dermatologist (skin specialist), a rheumatologist (specialist in autoimmune diseases), or a multidisciplinary team of doctors.

If you are sure it’s not an emergency, your primary care doctor is always a good place to start.

See your doctor if you have:

  • Joint pain
  • Shortness of breath all the time
  • Dry or painful eyes
  • Fatigue
  • Weight loss
  • Fevers
  • Changes to your appetite
  • For a new rash or other skin changes, see a dermatologist

Sarcoidosis treatment

Many cases of sarcoidosis go away on their own. Some people have symptoms that don’t get worse but instead stay the same. Others have symptoms that get worse over a long period of time.

In many cases, treatment is simply to watch and wait. Hopefully, symptoms will start to go away on their own.

If your doctor decides to treat your sarcoidosis, the goal will be to suppress the immune system. This helps reduce the inflammatory symptoms.

Skin and eyes can be treated with topical corticosteroids (steroids in skin ointments or eyedrops). Other organs will need oral corticosteroids, such as prednisone. These steroids can have side effects including mood changes, weight gain, osteoporosis, and increased infection risk.

More severe cases of sarcoidosis that don’t respond to corticosteroids may need stronger immunosuppressant medications. Since these drugs suppress the immune system, they may also increase your risk of infection.

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