Cardiac Amyloidosis Services

Cardiac amyloidosis is a rare condition in which a normally occurring body protein becomes defective and clumps together in the heart muscle. As the protein gathers deposits in the heart, it becomes more difficult for the heart to fill with blood. This causes symptoms that include shortness of breath, leg swelling, or fatigue.

UPMC’s multidisciplinary team of specialists is at the forefront of providing innovative, minimally invasive diagnostic and treatment options for people with cardiac amyloidosis.

What Are Cardiac Amyloidosis Services?

Cardiac amyloidosis can cause symptoms similar to other heart conditions. UPMC cardiology experts have the expertise and advanced technology to diagnose and treat people with cardiac amyloidosis.

What conditions do you treat?

Our team provides expert care for people with cardiac amyloidosis, as well as those who are having unexplained symptoms of the condition, including:

• Shortness of breath with activity.
• Swelling of ankles and feet.
• Numbness and tingling in fingers or toes.
• Lightheadedness or dizziness when getting up too quickly.
• Passing out (syncope).
• Irregular heartbeats (atrial fibrillation/atrial flutter).
• Low blood pressure.
• Unintentional weight loss.
• Nausea/vomiting.
• Persistent fatigue.
• An enlarged tongue, which sometimes looks rippled around its edge.
• Skin changes, such as thickening or easy bruising, and purplish patches around the eyes.

Who’s eligible for cardiac amyloidosis services?

If your doctor suspects that you may have cardiac amyloidosis or you have already gotten a diagnosis, you may be eligible for cardiac amyloidosis services at UPMC.

What Cardiac Amyloidosis Services Do You Offer?

UPMC specialists have access to advanced diagnostic technology and therapies for amyloidosis. Our team will create a plan to meet your unique needs.

Diagnostic care

The specialists at UPMC use advanced testing to diagnose cardiac amyloidosis. Our specialists are leaders in noninvasive tests and can often make the diagnosis without a cardiac biopsy.

Tests for cardiac amyloidosis might include:

• Pyrophosphate scanning — This test uses a small, safe amount of a radioactive substance to find abnormal amyloid protein deposits in your heart.
• Echocardiogram (ECHO) — This noninvasive ultrasound test uses sound waves to evaluate your heart's chambers and valves. The ECHO sound waves create an image on a monitor as an ultrasound transducer is passed over your heart.
• Cardiac MRI — MRI is a diagnostic procedure that combines large magnets, radio frequencies, and a computer to produce detailed images of your heart.
• PET scanning — This test detects areas of decreased blood flow in the heart. It is an accurate way to diagnose coronary artery disease while administering less radiation to patients.
• Blood tests — Blood tests look for signs of amyloidosis in the blood.
• Electrocardiogram (ECG or EKG) — This test records the electrical activity of your heart, shows abnormal rhythms (arrhythmias or dysrhythmias), and can sometimes detect heart muscle damage.
• Nerve function testing —This test can diagnose nerve problems related to amyloidosis.
• Biopsy — A biopsy is an invasive test that can confirm the presence of amyloid proteins in the heart.

Amyloidosis treatment

Treatment options for amyloidosis depend on the type you have.

Transthyretin (TTR) amyloidosis

Treatment for this type of amyloidosis focuses on stopping the TTR proteins from depositing amyloid onto organs/tissues. Our team of doctors will discuss the latest treatments and research studies with you.

Amyloid Light Chain (AL) amyloidosis

Treatment for this type of amyloidosis usually involves chemotherapy to reduce the overproduction of antibody light chains in bone marrow. Some patients may require bone marrow transplantation.

Treatment for symptoms

Various medications are used to manage symptoms and complications related to organ dysfunction from amyloid deposition, including medications for heart failure.

What Can I Expect From Cardiac Amyloidosis Services?

Our team of cardiologists, cardiac imaging specialists, and other medical experts will create a comprehensive plan to diagnose and manage your condition while reducing your risk of complications.

Before your visit

To prepare for your visit, you will be asked to provide:

• Name, address, and contact phone number.
• Insurance information.
• Relevant medical records and test results.
• A referral, if required by your health insurance company.

If you get a referral from your primary care doctor or another physician, they may be able to provide your test results and medical records to our team.

During your visit

When you arrive for your first appointment, you'll meet with a doctor, nurse practitioner, or physician assistant. He or she will ask about your medical history and perform an exam.

We'll give you:

• A complete explanation of your condition and treatment.
• A tailored patient education packet for you to take home.

Your health care provider will explain your treatment options based on how long you've had symptoms, your condition, and your health history.

Together, you will design and agree on a care plan.

Your care team may also:

• Order tests to learn more about your condition.
• Start treatment with medications or procedures.

After your treatment for cardiac amyloidosis

Our team will schedule follow-up appointments to check if your treatment has been effective. You should contact our office if:

• You have questions about your treatment plan or medications.
• Your symptoms get worse or do not improve as expected.
• You have any other concerns about your condition.

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Last reviewed by a UPMC medical professional on 2024-10-01.