Sarcoidosis

Symptoms of Sarcoidosis

Sarcoidosis can be difficult to diagnose. It is often confused with other diseases. A chest X-ray taken for other symptoms may lead your physician to send you for further testing. You may be referred to a pulmonary specialist.

The cause of sarcoidosis is unknown. Some research suggests that an infection or contact with something in the environment can cause the immune system to react. The disease can sometimes run in families, and there may be a genetic link for developing sarcoidosis. Sarcoidosis is not easily spread. You can’t catch it from someone else like you could a cold or flu.

Many people with sarcoidosis think they have the flu or a breathing infection before they are diagnosed. Sarcoidosis can affect many different organs, but it most commonly affects lungs.

Common symptoms of sarcoidosis include:

• Cough
• Shortness of breath
• Chest pain
• Night sweats
• Fatigue
• Wheezing or abnormal breathing
• Feeling congested

Sarcoidosis can also cause:

• Skin rashes or raised bumps on the skin
• Joint pain or stiffness
• Eye irritation, dry eyes, and sometimes blurry vision
• Fast heart rate or lightheadedness
• Kidney stones
• Increased levels of calcium in the bloodstream
• Unusual liver function

What are the risk factors for Sarcoidosis?

You are at higher risk for sarcoidosis if you:

• Are of African or Scandinavian descent
• Are a woman
• Have been in contact with dust or mold in your daily environments
• Are between 20 and 40 years of age

Diagnosing Sarcoidosis

If you have sarcoidosis, you may have symptoms for several months to years before your disease is diagnosed. Many people simply think they are tired or short of breath. Specialists such as skin doctors (dermatologists), joint doctors (rheumatologists), and lung doctors (pulmonologists) often diagnose sarcoidosis after they see you and do tests.

Imaging tests

Your provider may do a number of routine tests, including taking a sample of your blood, testing your lung function, and performing a chest X-ray if you have a new cough that lasts more than a few weeks, or new shortness of breath.

If you have abnormal chest X-ray findings that show enlarged lymph nodes or spots on your lungs, you may be sent to a lung specialist or surgeon for a biopsy. This means they may take a sample of your lung tissue. This sample can help providers understand what’s causing your symptoms and X-ray results. Because other diseases or infections can cause enlarged lymph nodes similar to those found in sarcoidosis, it’s important that the disease be properly diagnosed. This ensures that you get the right treatment.

Other tests

If you have a skin rash, sarcoidosis sometimes can be diagnosed by a biopsy. To do this, a skin specialist will remove a small amount of skin and look at it under a microscope. Because infections can also cause granulomas that look similar to sarcoidosis, your provider will test your lung or skin sample for infections such as tuberculosis to rule out other causes of your symptoms.

Your health care team may do the following tests:

• Bronchoscopy. This procedure uses a small scope with a camera. The scope is inserted into your nose and extended into your lung. It gathers small pieces of lung or lymph node tissue. This tissue is sent to a lab for testing.
• Mediastinoscopy. This procedure is done by making a small incision on your chest. A camera is used to look down into your chest, and small pieces of your lymph nodes may be removed and sent to a lab for testing.
• Skin biopsy. This is done if you have skin rashes or bumps. The doctor takes a small sample of your skin and sends it to a lab for testing.

After your providers get results from your tests, a specialist will discuss the results with you. They will help you decide on a treatment plan that works for you and causes the fewest side effects. Many people do not need treatment. However, whether you have treatment or not, your provider will monitor your health with follow-up appointments.

Specialists who treat sarcoidosis will likely see you in a follow-up visit after you start treatment. You may have your blood tested again to monitor the side effects from your medications.

If you have questions about any of these tests or procedures, talk to your health care team.

Treating Sarcoidosis

After you’re diagnosed with sarcoidosis, your provider will review your test results with you. He or she will determine if you need treatment. Many patients with sarcoidosis have minor or no symptoms and it goes away by itself. In this case, no treatment may be needed.

Your health care team

Sarcoidosis is often treated with the help of a team of health care professionals. Because the disease can affect so many organs, you may work with health care providers who specialize in the treatment of the lungs, heart, brain, kidneys, liver, eyes, and skin. At specialized medical centers, these health care providers work as a team to develop a complete treatment plan to control your symptoms and protect your overall health.

No matter what symptoms you may have, you will likely have breathing tests, an electrocardiogram, blood tests, and an eye examination to find possible problems.

For more information on these tests, see “Diagnostic Tests” under the Resources tab.

Medications may be used to reduce your immune system’s activity. These medications work in different ways and can have different side effects. It is important to tell your provider if you feel different after starting a new medication. It is also important to get your scheduled lab work completed on time.

Corticosteroids, such as prednisone, are medications that reduce the immune system’s activity. These can improve symptoms of cough, shortness of breath, eye irritation, skin rashes, and joint pain. These medications can have side effects, such as weight gain, sleeplessness, thinning of the bones, and sometimes vision changes. They may also cause high blood pressure and diabetes. You may be treated with these medications for a period of time. As your symptoms improve, your physician may tell you to take less.

Other medications, such as those used to treat malaria and arthritis, may help manage your sarcoidosis. All of these medications may have side effects and require close monitoring and changes by your physician. Work with your provider to determine whether these medications are right for you.

Living with Sarcoidosis

If you’ve been diagnosed with sarcoidosis, it is normal to feel anxious and unsure about your health. You may have symptoms that interfere with your daily routine. It is important to find a specialist who has experience with sarcoidosis. It can also be helpful to find a community or support group of others with sarcoidosis.

People with sarcoidosis can have very different symptoms from each other. Many people with sarcoidosis have breathing problems, but after treatment starts, symptoms may improve over several months. If sarcoidosis affects more than one organ, you may need longer treatment or combinations of medication. If your eyes are affected, you need to see an eye specialist to keep from losing your vision. Always talk to your provider about any new or worsening symptoms you experience. With good treatment and follow-up, your symptoms may improve, and you can feel better.

Managing Sarcoidosis

If you have sarcoidosis, work with providers and specialists in different areas of health care to manage your disease and symptoms. Often starting a new medication can come with new side effects. Make sure you talk about your side effects with your provider.

Because many of these medication side effects go away after you adjust to the medication, your provider may ask you to keep taking the medication to see if your sarcoidosis improves. If your symptoms last a long time (even with medication) and you cannot take part in daily activities, make sure to tell your provider.

Depression and anxiety can affect people with any illness, including sarcoidosis. Tell your provider if you have these feelings. Treatment for anxiety and depression may actually make your sarcoidosis treatment more effective.

Resources

Living with sarcoidosis requires help from your health care providers, your family, and your friends. Those who understand the disease can be a good resource for people with a new diagnosis who don’t know what to expect. Several national and regional organizations may be able to help you find answers.

The Lung Association recommends patients and caregivers join the Living with Lung Disease Support Community to connect with others diagnosed with this disease. You can also call the Lung Association’s Lung Helpline at 1-800-LUNGUSA to talk to a trained professional who can help answer your questions and connect you with support.

Learn more at:

• Foundation for Sarcoidosis Research (FSR): stopsarcoidosis.org
• Sarcoidosis Network Foundation, Inc.: sarcoid-network.org

Diagnostic tests

• Breathing tests. A respiratory therapist will coach you through this test that involves blowing into a tube. The test shows how much lung function you have and can also show how well you have responded to treatment after you’ve started taking medication.
• Chest computed tomography scan. This scan, also called a CT or “cat” scan, shows your lung tissue and the lymph nodes in your chest.
• Eye examinations. Ophthalmologists can sometimes tell whether sarcoidosis is affecting your eyes.
• Electrocardiogram (ECG) and echocardiogram. These are tests of the heart to be sure that the heart is beating normally.
• Laboratory tests (blood and urine tests). These tests can help providers see if you have inflammation in your body and high blood calcium levels. The tests also spot potential side effects from medications to treat sarcoidosis.

Questions to ask your health care provider

Making notes before your visit, as well as taking along a trusted family member or friend, can help you through the first appointment with your provider. The following are questions you can ask your provider to better understand this disease.

• What parts of my body are affected by sarcoidosis?
• What medications should I take and how do they work?
• What side effects could I expect from my medications?
• How will we follow up to see if my disease is responding to treatment?
• How long should I take my medicine before we decide whether it’s working or if I need a different medicine?
• What should I look for as a sign that my disease is getting better or worse?
• What is the best way to get in touch with you if I need to tell you about new problems before the next appointment?
• How will you communicate with other providers who are treating me?
• How might this disease affect my quality of life?
• Will sarcoidosis prevent me from working?

Some of these questions do not apply to all people with sarcoidosis. Some are hard to answer in one visit and may take more time to answer. A good working relationship with a provider who understands your disease is the beginning of finding solutions to living with sarcoidosis. Work with your health care team to live a healthy life you enjoy.