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Amyloidosis – What are the different types?

There are different types of amyloidosis. Each type can look different in each person.

Amyloid light chain (AL) amyloidosis is the most common type. It’s also called primary amyloidosis. The exact cause of AL amyloidosis is unknown. But, it may be linked to blood cancers like multiple myeloma. AL amyloidosis often affects the heart and kidneys. But, it can also affect the stomach, intestines, liver, nerves or skin.

Amyloid A (AA) amyloidosis is also called secondary amyloidosis. That’s because the amyloid clumps may be caused by another condition such as:

AA amyloidosis may also develop if a person has a chronic infection like:

  • An infection in the bone (osteomyelitis)
  • Chronic tuberculosis (TB)
  • Infections caused by diseases such as cystic fibrosis or Acquired Immune Deficiency Syndrome (AIDS)

AA amyloidosis may also develop in people who have certain cancers like Hodgkin lymphoma or kidney cancer.

AA amyloidosis often affects the kidneys, liver, stomach and intestines. Fortunately, AA amyloidosis may go away when the underlying condition is successfully treated.

Some types of amyloidosis are hereditary. That means that you may get amyloidosis if the genes that make proteins clump are passed down from a parent. One example is called hereditary amyloid transthyretin (ATTR) amyloidosis. Transthyretin (TTR) is a protein made by the liver. If the liver makes too much of it, the proteins may clump together to make amyloid. The amyloid from TTR often builds up in the heart or nerves.

ATTR can also develop in people who don’t inherit an abnormal TTR gene. This is called wild-type ATTR and the cause of their amyloidosis is due to TTR proteins becoming unstable with age.

Amyloids may develop in patients with kidney failure who are on dialysis. When the kidneys don’t work, they don’t help the body get rid of amyloids. Dialysis doesn’t get rid of the amyloids either. This is called kidney-related amyloidosis.

Symptoms and treatments may depend on the type of amyloidosis you have and where the amyloids build up. For example, if amyloids are building up in your heart, you may feel short of breath, have an unusual heartbeat, or have other signs of heart failure. If the amyloids are affecting your nerves, you might feel tingling or numbness, feel weak, have a weak grip, have trouble keeping your balance, or have bladder and bowel leaks. Talk to your health care team about your symptoms and the best ways to manage them. Talk to your doctor if any of your symptoms get worse or you have new symptoms.

Living with amyloidosis can be hard. Our goal is to help you understand your condition and symptoms and help you feel your best.

Here are some resources to help you manage your day to day.

The more you know about your amyloidosis, the easier it is to play an active role in your treatment. This is an important part of successfully treating and managing your condition. Your CVS Specialty CareTeam is available to answer your questions and help with side effects. They can also provide you with the information you need to effectively manage your condition. If you have questions or want to learn more, talk to your doctor or contact your CareTeam at  1-800-237-2767, M-F 8:00 am – 8:00 pm ET.

This information is not a substitute for medical advice or treatment. Talk to your doctor or health care provider about your medical condition and prior to starting any new treatment. CVS Specialty assumes no liability whatsoever for the information provided or for any diagnosis or treatment made as a result.