Multidisciplinary Sarcoidosis Clinic

What are the symptoms of sarcoidosis?

Symptoms of sarcoid are often related to the organ that it affects, and these symptoms can appear very rapidly or slowly over time. These may include aches, pain, fatigue and swollen lymph nodes. Because sarcoidosis is rare and the symptoms are similar to other conditions, it often takes a long time to diagnose.

In addition, you may experience specific symptoms related to organs that are affected:

• Lung or pulmonary sarcoid: Symptoms may include wheezing, coughing or shortness of breath similar to asthma or chronic obstructive pulmonary disease. Because asthma is usually diagnosed at a young age, an adult who receives a new “asthma” diagnosis should get evaluated for sarcoid.
• Heart: Sarcoidosis of the heart can cause dangerous heart rhythm abnormalities (ventricular tachycardia) and heart failure, leading to heart racing, passing out, shortness of breath, swelling and bloating.
• Eye: When sarcoid invades the eye it often causes a condition called uveitis, but it can also affect the glands that make tears for your eyes and other eye structures. Symptoms may include blurry vision, dry eyes, red or painful eyes, or floaters.
• Skin: Sarcoidosis of the skin can trigger red bumps on skin (especially on ankles and shins) that can be tender, sores on the nose or face or ears, and lumps can develop around older scars or tattoos.

How is sarcoidosis diagnosed?

Many times, doctors refer patients to us to confirm suspected sarcoidosis. Other patients haven’t found a treatment that works. We’ll review your existing test results and ask about your medical history. To make an accurate diagnosis, you may have more tests, including:

• Imaging: We use several tests to examine the structures inside your chest, including your heart and lungs. We may order a chest X-ray, computed tomography (CT scan), positron emission tomography (PET scan) or other tests to provide images of your organs. Some scans involve contrast, a dye that makes structures more visible on a scan.
• Pulmonary function tests: Regular pulmonary function tests check the health of your lungs. You’ll be asked to perform simple tasks like breathing in and blowing into a tube (spirometry) or walking for six minutes, while we measure the results.
• Heart tests: A heart rhythm test (electrocardiograph, often called EKG or ECG) shows how electricity moves through your heart. Many people with sarcoidosis have abnormal EKG results. Further testing, such as an echocardiogram, heart MRI or heart PET scan can help us understand how your heart is pumping blood and if there are signs of sarcoidosis in your heart.
• Biopsy: Your doctors may need to get a piece of tissue to make the official diagnosis of sarcoid. The procedure will be explained to you in detail prior to the biopsy and varies based on which area of the body is being biopsied.

Once your testing is completed, your multidisciplinary care team will review your case details and develop a treatment plan that best fits your sarcoid.

How is sarcoidosis treated?

Treatment of sarcoid depends on the locations and severity of the disease, and vary from simple to complex. Your treatment will be specialized for you, and your personalized care plan may include:

• Observation: Mild sarcoidosis symptoms may gradually resolve on their own. In this case, we’ll check in with you once or twice a year. This routine examination may include blood tests, chest X-rays, PET scans or an eye exam.
• Corticosteroids: People with more severe sarcoidosis may find relief from corticosteroid medications, which reduce inflammation in the body. Many people require these medications for one to two years. Some of the most severely affected patients may take corticosteroid therapy throughout their lives. Because steroids can raise the risk of osteoporosis (losing bone mass), we aggressively support bone health during this treatment.
• Nonsteroidal immunosuppressive drugs: Sometimes we use medications such as methotrexate, azathioprine, cellcept and cyclophosphamide in addition to or instead of corticosteroids. These drugs can reduce the negative effects of steroid medication. Sometimes they are called steroid-sparing medications or disease-modifying anti-sarcoid drugs (DMASDs).
• TNF-alpha inhibitors: Some types of sarcoidosis don’t respond to steroids or DMASDs. For these cases, we typically use a type of medication called a TNF-alpha inhibitor. These medications, such as REMICADE® (infliximab), often treat autoimmune diseases.
• Clinical trial therapies: Some patients have the option of trying new therapies through clinical trials. These trials can offer new medications for sarcoidosis that haven’t yet been approved for wider use. We participate in National Institutes of Health (NIH) and other sponsored studies.
• Organ transplant: It’s rare, but some people living with sarcoidosis experience irreversible organ failure. These patients may require an organ transplant. Most often, people receive a heart, lung or liver transplant.

Comprehensive sarcoidosis care at Henry Ford

Sarcoidosis can be complex. At Henry Ford, we provide optimal care for this challenging condition. We offer: