Within the MedStar Heart and Vascular Institute, the Sarcoidosis Clinic provides expert care to patients with cardiac and multiorgan (extracardiac) disease involvement.
What is Sarcoidosis?
Sarcoidosis occurs when inflammatory cells accumulate in the body forming growths called granulomas. It most commonly affects the lungs or lymph nodes but also can affect any organ, including the heart. These granulomas can make it difficult for your organs to function normally. Untreated sarcoidosis can result in permanent organ damage.
What are the risk factors for sarcoidosis?
Sarcoidosis can affect men and women of all ages and ethnicities. The cause of sarcoidosis is unknown, but you may be at increased risk of developing the disease if you:
- Are African American or have Northern European descent
- Are female gender, although men develop the disease as well
- Have family members who also have sarcoidosis
Symptoms
Sarcoidosis may affect multiple organs in the body and symptoms may vary based on the organ(s) affected. Some patients may not have symptoms at all, and the diagnosis is established when granulomas are incidentally found during diagnostic workup for other illnesses. Some patients may develop symptoms gradually while others develop sudden symptoms requiring immediate care. Sarcoidosis may cause:
- Fatigue
- Swollen lymph nodes
- Weight loss
- Joint pain and swelling
- Persistent dry cough
- Shortness of breath
- Chest pain
- Fainting
- Irregular heart beats
- Palpitations
- Swelling of the legs or the abdomen
- Skin rash or sores
- Blurred vision or severe light sensitivity
Tests
Diagnosing sarcoidosis is the first step to developing a treatment plan. Our specialists may recommend one or more diagnostic and imaging procedures.
An angiogram is a special X-ray taken as a special dye is injected through a thin, flexible tube called a catheter to detect blockages or aneurysms in blood vessels. It is important to ensure that your cardiac symptoms are not caused by a blockage in the arteries of your heart.
Cardiac catheterization is a minimally invasive way to diagnose and treat a variety of heart and vascular conditions by guiding thin, flexible tubes called catheters through blood vessels to problem areas.
Computerized Tomography (CT) Scan
The cardiac computed tomography scan, or cardiac CT, uses X-rays to create three-dimensional images of your heart and blood vessels.
An echocardiogram uses high-frequency sound waves to create images of your heart. The Echocardiogram will demonstrate the size and function of the heart chambers and detect problems with your heart valves.
An electrocardiogram, also known as an ECG, measures the heart’s electrical activity. The ECG will be able to detect an abnormal rhythm in your, which is common in patients with cardiac sarcoidosis.
Electrophysiology testing is used to evaluate the cause and location of an abnormal heartbeat (known as an arrhythmia).
An event monitor is a small device that records the heart’s electrical activity. It is similar to a Holter Monitor, but an event monitor measures heart rhythms over a much longer time.
Genetic Testing
Genetic Testing may provide additional information regarding your heart disease and your family’s risks. MedStar Heart and Vascular Institute has the expert care to offer genetic testing and counseling in order to better treat you and your family.
In a heart biopsy, your doctor will remove small samples of your heart muscle tissue that is sent to a laboratory to evaluate if there are any sarcoid particles in your heart. At the same time, if there is a concern that other organs are affected, a biopsy of such may also be recommended.
A Holter monitor is a small device that records the heart’s electrical activity. It is similar to an electrocardiogram, but whereas an electrocardiogram records over a few minutes, a Holter monitor records over the course of a day or two.
A loop recorder is a device that’s implanted underneath the skin of your chest to record your heart rhythm for up to three years.
Magnetic Resonance Imaging (MRI)
Magnetic resonance imaging, better known as cardiac MRI, is a combination of radio waves, magnets, and computer technology to create images of your heart and blood vessels.
Positron Emission Tomography (PET) Scan
A PET scan is a non-invasive procedure produces powerful images of the metabolic, physiologic, and biochemical activity in the body to better characterize the nature and extent of the anatomic abnormalities. A PET scan can show abnormalities that other imaging techniques may not detect, resulting in early and more accurate diagnosis, appropriate treatment, and closer monitoring.
Tilt table testing allows your doctor to determine the cause of explained fainting while monitoring changes in your blood pressure and heart rate while tilted at different angles.
Treatments
Our Sarcoidosis Clinic team works with other specialties, including pulmonology, rheumatology, neurology, ophthalmology, and dermatology, to treat sarcoidosis based on your organ involvement. Sometimes, symptoms are mild and do not require treatment. However, when treatment is necessary our team will develop and implement individualized plans of care to manage sarcoidosis and reduce your symptoms.
Medical treatment is geared toward reducing the inflammation of the affected tissues and preventing the chronic complications of sarcoidosis. Corticosteroids are one of the first medications used to reduce inflammation; however, the side effects of this medication may outweigh the benefits if patients have mild sarcoid involvement. Patients that have moderate-to-severe symptoms do benefit from these therapies particularly those with shortness of breath and cough. At first, patients may be prescribed a high dose of corticosteroids followed by a slow taper to the lowest effective dose. Unfortunately, the disease may relapse when taking low doses of corticosteroids. For this reason, patients may be started on adjunct therapies such as steroid-spearing medications that help control the inflammation in the tissues long-term.
Pacemaker
A pacemaker is a device that helps control various types of heart rhythm disorders. Contrary to implantable cardioverter defibrillators, pacemakers will not deliver a shock but rather will kick in to provide additional rhythm control should your heart require it.
Implantable Cardioverter Defibrillator (ICD)
An implantable cardioverter defibrillator (ICD) is a device implanted below your collarbone that monitors your heart’s rhythm. When it detects an abnormal rhythm, it delivers an electrical impulse or shock to the heart to correct it.
Heart Failure Treatment
If you have cardiac sarcoidosis, our team will utilize medications to improve heart function and reduce your symptoms.
If your heart becomes too weak, medical therapy may not be enough and heart transplant or mechanical heart support may be considered. The MedStar Heart and Vascular Institute is a leading heart transplant and mechanical support center and will continue to manage your care should you receive one of these therapies.
Why choose MedStar Health Infiltrative Cardiomyopathy team for cardiac sarcoidosis management?
The MedStar Sarcoidosis Clinic at MedStar Heart and Vascular Institute is internationally certified by the World Association for Sarcoidosis and Other Granulomatous Diseases. This designation provides a formal recognition of our team’s commitment in delivering state-of-the art care utilizing cutting edge treatments, research, and technology
- Specialized expertise: Our multidisciplinary team understands the pathophysiology of the disease and provide individualized management for this rare condition.
- Support and collaboration: Sarcoidosis, affects every aspect of your life and wellbeing. Our approach is to offer comprehensive care from experts in multiple specialties to support you throughout this process. Through our local support group, you will be able to connect to other patients and families and learn different strategies that lead to recovery.
- Innovative Treatments: Our team is currently involved in several ongoing clinical studies to improve the management of sarcoidosis.
- Organ transplant leaders: MedStar Heart and Vascular is the leading transplant program in the DMV area, which may provide an option for people with advanced sarcoidosis.
Our providers
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Sarfraz A. Durrani, MD
Electrophysiology
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Erika D Feller, MD
Heart Failure And Transplantation Cardiology
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Margaret Bell Fischer, MD
Adult Congenital Cardiac Disease & Electrophysiology
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Thomas Marlon Fishbein, MD
Liver Transplant Surgery, Hepatobiliary And Pancreatic Surgery & Transplant Surgery
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Shital Gandhi, PA-C
Heart Failure And Transplantation Cardiology
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Michael Shawn Goldstein, MD
Electrophysiology
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Sandeep M Jani, MD
Heart Failure And Transplantation Cardiology
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Richard Paul Jones, MD
Electrophysiology
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Jay Aaron Mazel, MD
Electrophysiology
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Miguel A Pinilla Vera, MD
Heart Failure And Transplantation Cardiology
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Edward V. Platia, MD
Electrophysiology
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Maria Esperanza Rodrigo, MBBS
Heart Failure And Transplantation Cardiology
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Manish Shah, MD
Electrophysiology
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Apostolos Tsimploulis, MD
Electrophysiology
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Megan Joy Zemrose, PA
Electrophysiology
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Mohit Rastogi, MD
Electrophysiology
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Additional resources
MedStar Health sarcoidosis support group
Our Multidisciplinary Infiltrative Cardiomyopathy Program offers Sarcoidosis Wellness Groups to share strategies on how to live well despite the diagnosis. Our wellness groups are focused on providing education regarding the disease process and medical treatments by our well recognized experts on the field. Additionally, a wellness element is included in each meeting to fill in the gap between medical treatment and the need to develop coping mechanisms to continue to have optimal quality of life. Currently, our groups meet online on a quarterly basis but hope to offer in-person meetings in the near future. To learn more, please call 202-877-0161.
Ask MedStar Heart & Vascular Institute
Have general questions for our heart and vascular program? Email us at AskMHVI@medstar.net. If you have clinically-specific questions, please contact your physician’s office.