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WHAT YOU NEED TO KNOW:
What is amyloidosis?
Amyloidosis is a disease that causes amyloid to collect in your organs. Amyloid is a protein that builds up in tissues and organs. Your nervous system, brain, heart, or digestive system can all be affected. Amyloidosis can be local (in one body area) or systemic (in your whole body). Signs and symptoms can range from mild to severe. Severe forms of amyloidosis can lead to organ failure and be life-threatening.
What increases my risk for amyloidosis?
- Age older than 50 years
- Being male
- Infection such as tuberculosis (TB) that is not treated
- A chronic infectious or inflammatory disease
- A family history of amyloidosis
- Dialysis for several years
What are the signs and symptoms of amyloidosis?
You may not have signs or symptoms right away. Any of the following may develop, depending on the organ or tissues involved:
- An irregular heartbeat, an enlarged heart, or heart failure
- Kidney failure
- Memory problems or trouble thinking clearly
- Swollen ankles and legs
- Feeling tired and weak
- Numbness, tingling, or pain in your hands or feet
- Swollen or painful joints
- Bruising easily, purple patches around your eyes
- Shortness of breath
- Changes in your nails, or patchy hair loss
- Trouble swallowing, diarrhea that may be bloody, or constipation
- A large tongue, full feeling when you eat, or weight loss without trying
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. Tell your provider when signs and symptoms started. Your provider will check for a skin rash or swelling in your joints. You may also need any of the following, based on your signs and symptoms:
- 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.
- Echocardiography or MRI pictures may be used to check how well your heart is working.
- Ultrasound pictures may be used to see if your kidney, liver, or spleen is enlarged.
- Endoscopy is a procedure used to check your stomach and intestines for bleeding. Your healthcare provider will use a scope (bendable tube with a light and camera).
How is amyloidosis treated?
Amyloidosis cannot be cured. Treatment is aimed at managing symptoms and reducing the amount of amyloid your body produces. Treatment may be needed for another health condition that is causing amyloidosis. You may need any of the following:
- Medicines may be used to decrease inflammation causing joint pain or swelling. You may also need medicine to control nerve pain. Medicine may also be given to 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 may be needed. This 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.
- Dialysis may be needed if you develop kidney failure. Dialysis is a procedure used to clean your blood.
- 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 be on a special diet. Examples include a low-protein or low-sodium (salt) diet. You may need to limit the amount of meat you eat if you need to be on a low-protein diet. This is because some proteins in meat may increase the amount of amyloid your body makes.
- Drink liquids as directed to balance your fluid levels. 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 keep 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. Rest as needed.
- Ask about supplements that may help relieve symptoms. Fish oil supplements can help reduce inflammation. This may help with joint pain and stiffness. Ask about other vitamins, minerals, or supplements that can help control your symptoms. Do not take any supplements without talking to your healthcare provider.
When should I seek immediate care?
- You have sudden or severe shortness of breath at rest.
- You have a fast or pounding heartbeat.
- You are dizzy or faint when you stand quickly.
When should I contact my healthcare provider?
- You have a fever.
- You have new or worsening signs or symptoms.
- You have questions or concerns about your condition or care.
Care AgreementYou 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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