Cardiac Amyloidosis

You have been diagnosed with cardiac amyloidosis. This sheet will help you better understand the disease. Knowing more about it can help you make the best decisions about your care. If you have any questions or concerns, talk with your doctor. They are here to help.

KAHR-dee-ak am-eh-loy-DOH-sihs

When you have amyloidosis, your body makes too much of certain proteins. These proteins build up and clump together, making a waxy substance called amyloid. Clumps of amyloid can impair how your body works and can damage parts of it.

There are many types of amyloidosis. Some kinds are systemic. That means they affect many parts of the body. Other types affect only one part of the body, such as an organ like the liver or heart. When amyloid builds up in the heart, the disease is called cardiac amyloidosis. It can lead to heart failure, an irregular heartbeat, and other problems.

The exact cause of cardiac amyloidosis is often unknown. But it tends to occur in older adults. In some cases, it can be passed down in families. A change in a gene may also cause an overproduction of proteins.

Cardiac amyloidosis may also be caused by other diseases. Some of these include:

• Multiple myeloma.
• Rheumatoid arthritis.
• Bowel disease.
• Psoriatic arthritis.

The symptoms of cardiac amyloidosis can vary from person to person. And your symptoms may get worse as amyloid builds up in your heart. You may have symptoms such as:

• Shortness of breath with activity or at rest.
• Fatigue.
• Swelling of the legs or belly.
• Lightheadedness or fainting.
• Irregular heartbeat.
• Chest pain (angina).

If amyloid is also building up in other parts of your body, you may have:

• Weight loss.
• Tingling or numbness in your arms or legs.
• Nausea.
• Constipation.
• Lack of appetite.

Your doctor will talk with you about your treatment options. They will depend on things like your age, your overall health, and your preferences. They will also depend on the type of amyloidosis you have and the extent of the disease. Together, you and your doctor can decide what treatment is best for you.

Your treatment options may include:

• Diuretics. Cardiac amyloidosis often leads to heart failure, so your doctor may give you a diuretic. This medicine can help reduce fluid buildup and swelling in the body. It can ease the work your heart has to do.
• Medicines that target amyloid. Your doctor may prescribe medicines to help lower or get rid of amyloid in your body. They can be used for some types of the disease.
• Other treatments. If another health problem is causing the cardiac amyloidosis, treating that problem may help. For instance, you may have chemotherapy if multiple myeloma is causing the disease.
• Heart transplant. If the heart is badly damaged, it may need to be replaced. This surgery is often done after all other treatments have been tried.

Cardiac amyloidosis can lead to other health problems. They are called complications. They may include:

• Heart failure.
• Irregular heartbeat.
• Heart attack.
• Nerve problems.
• Kidney problems.
• Skin changes.

Work closely with your health care team. They are here to support you in your treatment decisions. It's also helpful to take an active role in your care, such as:

• Keeping all appointments.
• Getting regular screenings or other tests.
• Taking your medicines as directed.
• Asking about clinical trials.

You can also find support through the Amyloidosis Foundation at amyloidosis.org.

If at any time you have the following symptoms, call 911 right away.

• Trouble breathing
• Severe chest pain
• Loss of consciousness

Reach out to your doctor right away if:

• You have a fever of 100.4°F (38°C) or higher, or as directed by your doctor.
• Your symptoms, such as angina, don't get better or they get worse.
• You have new symptoms.