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Amyloidosis

WHAT YOU NEED TO KNOW:

What is amyloidosis?

Amyloidosis is a disease that causes an abnormal protein called amyloid to build up in your organs. Your heart, kidneys, liver, spleen, digestion, and nervous system can all be affected. Severe forms of amyloidosis can lead to organ failure and be life-threatening.

What are the signs and symptoms of amyloidosis?

You may not have signs or symptoms until the condition is considered advanced. Signs and symptoms may include any of the following:

  • Swollen ankles and legs, or painful joints
  • Severe tiredness and weakness
  • Shortness of breath, especially when you lie flat
  • Numbness, tingling, or pain in your hands or feet
  • Diarrhea, constipation, or weight loss without trying
  • A large tongue or trouble swallowing
  • Bruising easily, or purple patches around your eyes

How is amyloidosis diagnosed?

Amyloidosis can be hard to diagnose because the signs and symptoms are similar to other conditions. Your healthcare provider will examine you and ask about your symptoms. You may need any of the following:

  • Blood and urine samples are tested for the protein. The tests may also show signs of organ damage. Your liver and thyroid may be checked to see how well they are working.
  • A biopsy is a procedure used to take samples of tissue to be tested. A sample of fat from your abdomen will be tested first. If this test does not show clear signs of amyloidosis, samples may be taken from other areas. These include organs, such as your kidney or liver, or your bone marrow.
  • An echocardiogram is a type of ultrasound. It shows the structure, movement, valves, and blood vessels of your heart.
  • An MRI takes pictures of your organs to show their size and check for any inflammation. You may be given contrast liquid to help the pictures show up better. Tell the healthcare provider if you have ever had an allergic reaction to contrast liquid. Do not enter the MRI room with anything metal. Metal can cause serious injury. Tell the healthcare provider if you have any metal in or on your body.
  • Nuclear imaging uses a radioactive dye injected into a blood vessel to show how your organs are working. The dye helps your healthcare provider see the pictures of your heart and blood vessels better. It may also show if you have inflammation or myocarditis.

How is amyloidosis treated?

Amyloidosis cannot be cured. The goal of treatment is to manage your symptoms and decrease the amount of amyloid in your body. You may need any of the following:

  • Chemotherapy alone or with stem cell transplant may help remove the substance that causes amyloid formation.
  • Medicines may be used to decrease inflammation causing joint pain or swelling. You may also need medicine to control nerve pain or help your body get rid of extra fluid. Blood thinning medicine may also be needed. Chemotherapy or certain antibodies may be used to treat some types of amyloidosis.
  • A bone marrow transplant is a procedure used to replace your bone marrow with donor marrow. This is usually done in people who also have multiple myeloma. A stem cell transplant may be used instead for other kinds of amyloidosis.
  • Surgery may be used for severe amyloidosis, or if other treatments do not work. Surgery may be used to remove your spleen. You may need a kidney, liver, heart, or bone marrow transplant. A pacemaker may be put in to control your heartbeat if your heart is affected.

What can I do to manage amyloidosis?

  • Eat a variety of healthy foods. Healthy foods include fruits, vegetables, low-fat dairy products, fish, whole-grain breads, cooked beans, and limited lean meats. Healthy foods can help your organs work correctly and increase your energy. Your healthcare provider will tell you if you need to limit protein or sodium (salt). He or she will tell you how much is okay to have each day. You may need to limit meat if you must limit protein. Some proteins in meat can increase the amyloid your body makes.
    Healthy Foods
  • Drink liquids as directed. You will need to drink enough liquid to prevent dehydration and help your organs work well. You may need to limit liquids depending on the kind of amyloidosis you have, or if you are getting dialysis. Work with your healthcare providers to find the right fluid balance for you. Your providers will tell you how much liquid to drink each day and which liquids are best for you.
  • Exercise as directed. Exercise can help relieve joint stiffness and pain. Exercise can also help your organs work well. If you feel short of breath, stop and rest. You may feel more tired while you are doing your daily activities.
    Walking for Exercise

Call your local emergency number (911 in the US) if:

  • You have sudden or severe shortness of breath at rest.
  • You have a fast or pounding heartbeat.

When should I call my doctor?

  • You are dizzy or feel faint when you stand quickly.
  • You have a fever.
  • You have new or worsening signs or symptoms.
  • You have questions or concerns about your condition or care.

Care Agreement

You have the right to help plan your care. Learn about your health condition and how it may be treated. Discuss treatment options with your healthcare providers to decide what care you want to receive. You always have the right to refuse treatment. The above information is an educational aid only. It is not intended as medical advice for individual conditions or treatments. Talk to your doctor, nurse or pharmacist before following any medical regimen to see if it is safe and effective for you.

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Learn more about Amyloidosis

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Symptoms and treatments

Mayo Clinic Reference

Further information

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