Sarcoidosis

Cardiac sarcoidosis symptoms

When granulomas grow in your heart tissue, they can affect how your heart works. This could lead to:

• Chest pain
• Shortness of breath
• Fluttering or irregular heartbeats
• Fainting
• Swelling in your legs from excess fluid
• Heart failure

Eye sarcoidosis symptoms

You might have signs of sarcoidosis in your eyes that will only show up on an eye exam. If you do have symptoms, they might include:

• Blurred vision
• Eye pain
• Dry eyes
• Burning or itching eyes
• Severe redness
• Light sensitivity 

Other symptoms

If sarcoidosis affects your nervous system, it can cause a wide range of symptoms, including loss of hearing, taste, and smell; dizziness; seizures; and mental health changes. 

Sarcoidosis can also affect the liver, your bones, or any other organ. 

Lofgren syndrome

While many cases of sarcoidosis come on gradually, a type called Lofgren syndrome starts suddenly, often with a fever, and three specific signs and symptoms:

• Joint pain and swelling that may travel from one part of your body to another
• Enlarged lymph nodes in your chest
• A rash called erythema nodosum that shows up as flat, firm, painful lumps, often on your shins

Young adults assigned female at birth are most at risk for this syndrome, though it can show up in anyone. It's most common in spring.

Sarcoidosis Risk Factors

Sarcoidosis is a rare disease, affecting fewer than 200,000 people in the United States. It can happen in people of any age, race, or gender, but is more common in some groups than others. Risk factors include:

Age. Sarcoidosis most often shows up between ages 25 and 40.

Race. In the United States, sarcoidosis is most common among people of African descent. People of Scandinavian descent also have an increased risk.

Gender. Sarcoidosis is slightly more common among those assigned female at birth than those assigned male.

Environment. If you live or work around insecticides, molds, dust, or other substances that might trigger inflammation, you may face a higher risk. Farmers, firefighters, and autoworkers are in this group. Military veterans exposed to burn pits are too.

Family history. If a close relative has sarcoidosis, your risk is higher. 

Medications. Risks are higher if you take certain drugs, including some used for HIV and cancer.

Sarcoidosis Causes

The exact cause of sarcoidosis is not known. Studies suggest that in some people, the inflammation that leads to symptoms is triggered by an infection or by exposure to something else in the environment, such as chemicals or dust. Sarcoidosis might also involve autoimmune responses, in which your immune system attacks your body's own proteins.

Sarcoidosis Diagnosis

Sarcoidosis can be hard to diagnose, partly because you might have no clear symptoms or your symptoms and test results may mimic those seen in other conditions. Doctors rely on three criteria to diagnose it:

• Your symptoms
• The presence of granulomas
• The lack of other explanations

To start the process, your doctor will carefully review your medical history and examine you. The main tools your doctor will use to diagnose sarcoidosis include:

Chest X-rays to look for granulomas and scarring in your lungs and heart. (Some people are diagnosed with sarcoidosis after a chest X-ray is done for some other reason.) The X-ray can also help the doctor see how advanced any lung involvement is – a process called staging.

Other imaging tests, such as an MRI or ultrasound. These can look for granulomas elsewhere in your body.

Biopsies, which are tests in which small tissue samples are taken to check for signs of disease. You might get biopsies of your skin, lymph nodes, lungs, or other organs. If you need a lung or lymph node biopsy, your doctor may do a bronchoscopy, in which a lighted tube is passed down your throat to reach the target areas. Tissue or fluid from your lungs might also be collected with a surgery called a mediastinoscopy that requires a small cut in your neck. An alternative procedure called a endobronchial ultrasound-guided transbronchial needle aspiration (EBUS-TBNA) can be done without a cut. It uses a small ultrasound device and a thin needle passed through your throat. 

Other tests might be done to confirm the diagnosis or see how sarcoidosis is affecting your body. These could include:

• Lab tests of your blood and urine to show how your kidneys, liver, and other organs are working
• Lung function tests to see if you have any breathing problems
• Eye exams to look for signs of damage, even if you aren't having any eye symptoms
• Heart tests,including an electrocardiogram (EKG) to check the electrical activity in your heart
• Neurological tests to see if your nervous system is affected 
• Imaging tests, such as a PET scan, that can show inflammation in your body
• Tuberculosis skin test to rule out TB, which is sometimes mistaken for sarcoidosis

 Sarcoidosis Treatment

There is no cure for sarcoidosis, but the disease often gets better on its own over time. Many people with sarcoidosis have mild symptoms and don't need treatment. Treatment, when it is needed, can reduce symptoms and prevent organ damage.

Sarcoidosis medications

Your doctor may prescribe medications including:

Corticosteroids. These drugs, such as prednisone and cortisone, reduce inflammation. You might get them as pills, inhaled sprays, or creams, depending on which parts of your body are involved. These are the most common treatments for sarcoidosis. Side effects of steroid pills can include mood changes, weight gain, increased blood pressure, and increased blood sugar. 

Immunosuppressants. These drugs tamp down your immune system, reducing inflammation and organ damage. Methotrexate is an immunosuppressant drug often used for sarcoidosis. You take these drugs as pills or shots. Side effects can include liver damage or blood problems.

Anti-tumor necrosis factor-alpha antibodies (anti-TNF-alpha antibodies). These drugs target a specific immune system chemical. You get them through an intravenous (IV) treatment, meaning the drugs go through a needle into a vein. Side effects can include an increased risk of serious infection.

Sarcoidosis Stages

Your doctor may tell you that your disease is at a certain stage, between 0 and IV. These stages, sometimes called the Siltzbach classification system, are based on how your lungs look on a chest X-ray.

You can have serious symptoms at any stage, but doctors generally expect people at lower stages to have a higher chance of recovering completely, even without treatment. You can move between stages or not.

These are the stages:

Stage 0: No signs of sarcoidosis in your lungs or the lymph nodes in the center of your chest (though you may have signs elsewhere)

Stage I: Granulomas in the lymph nodes only. You may have no symptoms or may have fevers, joint pains, and rashes that developed suddenly. This combination of symptoms and lymph node involvement is called Lofgren syndrome and is the type of sarcoidosis most likely to go away on its own, usually within 6 months to 2 years.

Sarcoidosis Complications

For most people, sarcoidosis is a temporary condition that goes away, with or without treatment, and without permanent damage. About two-thirds will recover within 2 to 3 years; those with Lofgren syndrome tend to get better even sooner. 

If you're still having symptoms after 3 years, you are more likely to keep having symptoms. About 10% to 20% of people with long-lasting sarcoidosis develop permanent organ damage, most often in the lungs. 

 Long-term complications can happen in several part of the body:

Lungs. If you have permanent scarring in your lungs, it can get harder to breathe. You might develop a condition called pulmonary hypertension, a type of high blood pressure affecting the blood vessels in your lungs. It can make your heart work harder than normal to get blood into your lungs. 

Eyes. Inflammation may damage your retinas, which might eventually lead to blindness. In rare cases, sarcoidosis leads to glaucoma or cataracts. 

Kidneys. Sarcoidosis can change the way your body handles calcium, potentially leading to kidney stones and poor kidney function.

Heart. If you have granulomas in your heart, you can have problems with heart rhythm, blood flow, and normal heart functioning.

Nervous system. When sarcoidosis affects the brain and nerves, it can lead to symptoms that mimic multiple sclerosis, such as weakness and numbness. It can also cause drooping facial muscles and symptoms ranging from seizures to hearing problems.

Can sarcoidosis be fatal?

Most people with sarcoidosis will live as long as people without the condition. Death, from heart, lung, or other problems, happens in 1% to 5% of cases.

Living With Sarcoidosis

When you have sarcoidosis, it's important to follow recommendations from your doctor and to let the doctor know if you have any new or changing symptoms.

Even if you're not having bothersome or new symptoms, keep follow-up appointments so your doctor can monitor your health, see if medications are working, and spot any complications.

You also can feel better and limit complications and treatment side effects by making some lifestyle changes in these areas:

Healthy eating. Aim for a nutritious diet, with lean meats and other proteins, fruits, vegetables, whole grains, and not too much sugar. Try to maintain a healthy weight.

Avoiding alcohol. Some medications used for sarcoidosis can be hard on your liver. Alcohol can increase the risk of liver damage.

Not smoking. Smoking can make your lung symptoms worse. Reach out to a smoking cessation program if you want to quit and need help.

Being physically active. Staying active can improve your mood, strengthen your muscles, and reduce fatigue.

Managing stress. Stress reduction techniques like meditation can help some people who have a chronic illness. 

Getting enough sleep. Improving your sleep can lower inflammation and improve your well-being. If you are struggling to sleep, talk to your doctor.

Seeking support. If you're struggling to cope, consider meeting with a counselor or joining a support group.

Takeaways

Sarcoidosis differs greatly from person to person. Most people will recover from symptoms that range from coughing, to skin rashes, to vision problems. For others, sarcoidosis becomes a chronic condition. Medications and lifestyle changes can make the disease more manageable.