Sarcoidosis

No matter what part of your body is affected by sarcoidosis, we can help you control your symptoms and prevent complications.

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For Lung Services related requests:

1-319-356-8133

For Cardiac Sarcoidosis Referrals:: 1-319-356-7102

For all other requests:: 1-800-777-8442

Thanks to modern treatments, people with sarcoidosis have a much better quality of life than in the past. But the key to getting sarcoidosis under control—and preventing serious complications—is an early and accurate diagnosis.

Fortunately, University of Iowa Health Care experts have the experience it takes to distinguish sarcoidosis from other conditions.

Because we see so many people with this disease, we know the subtle signs to look out for. We have the expertise in evaluating and managing your sarcoidosis regardless of which organ is involved.

You can also take comfort in knowing we offer the treatments you need to live well with sarcoidosis. Whether it affects your lungs, heart, or other organs, we have specialists who can help.

What is sarcoidosis?

Sarcoidosis is an inflammatory condition that causes your immune system to produce granulomas (tiny clusters of inflamed white blood cells).

Although granulomas can develop anywhere in your body, including the heart and eyes, they nearly always affect the lungs.

While the causes of sarcoidosis are unknown, it’s thought that certain people are more likely to develop this disease because of their genetics. It may also occur when your immune system overreacts to an environmental trigger that’s normally harmless.

Sarcoidosis symptoms

Sarcoidosis symptoms—and their severity—vary widely from person to person.

Some people report that they just don’t feel right, with symptoms like fatigue, swollen lymph nodes, or joint pain. Others develop symptoms in each organ where granulomas develop. And still others have no symptoms at all.

When symptoms do occur, they often include the following:

Lung symptoms: Most people with sarcoidosis have granulomas in their lungs. This leads to symptoms like dry cough and shortness of breath.
Skin symptoms: You may develop various rashes or bumps on or under your skin.
Eye symptoms: If your eyes are affected by sarcoidosis, you may have pain, redness, or dryness. You may also develop vision changes, such as vision loss or blurred vision.
Heart symptoms: Granulomas in the heart can cause arrhythmia (irregular heartbeat) or weaken the heart muscle, causing heart failure.
Nervous system (brain and spine) symptoms: You may have headaches, seizures, vision changes, or weakness and/or numbness in different parts of your body.

Complications of sarcoidosis

If you don’t receive proper treatment for sarcoidosis, you may develop complications in the affected organs. These could include:

Pulmonary fibrosis (irreversible scarring in the lungs)
Pulmonary hypertension (high blood pressure in the arteries of the lungs)
Permanent vision loss
Heart failure
Neurological deficits

Sarcoidosis diagnosis

For providers who don’t typically encounter sarcoidosis, the condition can be tricky to diagnose because:

It can cause a wide range of symptoms throughout your body.
It can be mistaken for many other medical conditions.
Symptoms don’t follow a typical pattern (for some people the first symptoms may be heart- or lung- related, while others first notice skin problems).

For these reasons, the process of diagnosing sarcoidosis is like putting a jigsaw puzzle together, piece by piece. We often evaluate symptoms and run tests one by one, until we see the whole picture—and solve the puzzle.

Expert evaluations

Our team offers tests you may need to confirm or rule out sarcoidosis, including:

Imaging tests: We can take detailed pictures of any organ that might be affected. We offer high-resolution CT scans, MRI, echocardiograms, and more.
Biopsy: We take tissue samples from one or more areas of your body when needed. We’ll study these samples under a microscope to look for the granulomas associated with sarcoidosis and to exclude other diseases.
Blood tests: Certain blood tests can tell us if there are problems with your liver, kidneys, or other organs.
Pulmonary function test: We have you breathe into special devices that measure your lung function.
Electrocardiogram (ECG or EKG): This noninvasive test checks your heart for signs of arrhythmia.
Slit lamp exam: We use a special microscope to look at the inside and outside of your eyes.

The sooner we diagnose sarcoidosis, the sooner we can begin treating you—and prevent serious complications like organ damage.

Sarcoidosis treatment from UI Health Care

With proper diagnosis and treatment, most people with sarcoidosis can expect to live a long, full life.

Our goal is to provide treatments that control the inflammation from sarcoidosis. This means your symptoms go away for months or even years. During this time, you probably won’t need any treatments.

We’ll keep an eye on you through regular follow-up visits. And we can restart your treatments if your symptoms flare back up.

We also offer advanced care for chronic sarcoidosis (your symptoms don’t get better with treatment and your disease keeps progressing). For example, we can treat even the most serious complications, such as pulmonary fibrosis and heart failure.

A convenient, collaborative approach

When you receive sarcoidosis care from UI Health Care, your treatment plan will be led by your sarcoidosis specialists. They’ll oversee and coordinate all your care from head to toe—even if you have granulomas outside the lungs.

With this streamlined approach, you get most of your care from a single provider who knows your health history. And if you need additional care from a different specialist, your pulmonologist will pull in the right expert.

Some of the specialists your pulmonologist could team up with include:

Electrophysiologists who can help you manage sarcoidosis-related arrhythmia
Heart failure cardiologists who manage complications that could lead to heart failure
Neurologists who specialize in treating complications like headaches and seizures
Ophthalmologists who diagnose and treat eye problems caused by sarcoidosis, such as uveitis

Sarcoidosis treatment options

We use several types of medication to treat sarcoidosis. These medications can help improve your symptoms—and prevent organ damage—no matter where granulomas form in your body.

They include:

Steroid medicines: Also known as corticosteroids, these medicines—including prednisone—quickly reduce inflammation in your body. Because long-term use can cause unpleasant side effects, we usually prescribe them for a short period of time. After tapering off corticosteroids, we’ll likely switch you to another immunosuppressant drug to control your disease.
Immunosuppressant drugs: These medications, including methotrexate, also control inflammation by calming your immune system. Although they don’t work as quickly as corticosteroids, they’re safer to use long-term.
Biologics: These powerful injectable or IV (intravenous) medicines, including infliximab and adalimumab, target specific signals in the immune system. Because of their risk of side effects, they’re reserved for people who don’t respond to first- or second-line treatments.

A leader in sarcoidosis research

Even though there are more sarcoidosis treatment options than ever before, there is still work to be done.

Our pulmonologists who treat sarcoidosis are also scientists who research sarcoidosis. We’re working to understand what causes this condition and what factors increase the risk of developing it. We’re also studying new and better ways to treat sarcoidosis and its complications.

Some of our current efforts include:

A study funded by the National Institutes of Health that examines cognitive (thinking) problems in people with sarcoidosis.
An analysis of nasal swabs collected from patients at several points in time (such as the time of diagnosis and after starting treatment). We track how these patients respond to different treatments, with the hope of better predicting disease progression.
Research into blood tests that may confirm whether someone will benefit from a sarcoidosis medication before they start taking it. This would prevent people from unnecessarily taking a drug that doesn’t help them.

One of the nation’s only cardiac sarcoidosis programs

A small number of people who have sarcoidosis develop a condition called cardiac sarcoidosis. It causes granulomas to form in the tissues of the heart. This can cause irregular heartbeats (arrhythmia) and can lead to heart failure.

Cardiac sarcoidosis diagnosis

Cardiac sarcoidosis can be hard to diagnose, because it can look like other heart conditions. UI Health Care is one of just a few health systems in the country with a specialized cardiac sarcoidosis program.

Our heart failure cardiologists are experts in diagnosing and treating cardiac sarcoidosis. They use tests that include:

Cardiac MRI to look for heart abnormalities
Echocardiogram to look for problems in the heart muscle and valves
Electrocardiogram to check heart rhythm
Holter monitor to monitor heart rhythm over one or two days
Positron emission tomography (PET) scans to look for inflammation
Tissue biopsy to look for granulomas in the heart

Treatments for cardiac sarcoidosis

Cardiac ablation, a minimally invasive procedure to block abnormal electrical signals in the heart
Implantable cardioverter defibrillator (ICD) to restore normal heart rhythm
Medications that regulate heart rhythm
Pacemaker to stabilize heart rhythm
Immunosuppressants, steroids, steroid sparing agents, or biologics to help suppress inflammation in the heart
Heart failure medication to help improve heart function

If you have severe cardiac sarcoidosis, you could be a candidate for a heart transplant or heart pump.

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Need help finding a sarcoidosis specialist?

If you’re looking for experts who can help you manage and monitor your sarcoidosis, give us a call. We see patients from all over the Midwest who don’t have comprehensive sarcoidosis care in their own communities.

Call 1-319-356-8133 Cardiac Sarcoidosis Referral: Call 319-356-7102 Request an appointment

Sarcoidosis