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Amyloidosis

WHAT YOU NEED TO KNOW:

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.

DISCHARGE INSTRUCTIONS:

Seek care immediately if:

  • 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.

Contact your healthcare provider if:

  • You have a fever.
  • You have new or worsening signs or symptoms.
  • You have questions or concerns about your condition or care.

Medicines:

You may need any of the following:

  • Antirheumatic medicines may be used to decrease inflammation causing joint pain or swelling.
  • NSAIDs , such as ibuprofen, help decrease swelling, pain, and fever. NSAIDs can cause stomach bleeding or kidney problems in certain people. If you take blood thinner medicine, always ask your healthcare provider if NSAIDs are safe for you. Always read the medicine label and follow directions.
  • Diuretics are used to help your body get rid of extra fluid.
  • Prescription pain medicine may be given. Ask your healthcare provider how to take this medicine safely. Some prescription pain medicines contain acetaminophen. Do not take other medicines that contain acetaminophen without talking to your healthcare provider. Too much acetaminophen may cause liver damage. Prescription pain medicine may cause constipation. Ask your healthcare provider how to prevent or treat constipation.
  • Blood thinners help prevent blood clots. Examples of blood thinners include heparin and warfarin. Clots can cause strokes, heart attacks, and death. The following are general safety guidelines to follow while you are taking a blood thinner:
    • Watch for bleeding and bruising while you take blood thinners. Watch for bleeding from your gums or nose. Watch for blood in your urine and bowel movements. Use a soft washcloth on your skin, and a soft toothbrush to brush your teeth. This can keep your skin and gums from bleeding. If you shave, use an electric shaver. Do not play contact sports.
    • Tell your dentist and other healthcare providers that you take anticoagulants. Wear a bracelet or necklace that says you take this medicine.
    • Do not start or stop any medicines unless your healthcare provider tells you to. Many medicines cannot be used with blood thinners.
    • Tell your healthcare provider right away if you forget to take the medicine, or if you take too much.
    • Warfarin is a blood thinner that you may need to take. The following are things you should be aware of if you take warfarin.
      • Foods and medicines can affect the amount of warfarin in your blood. Do not make major changes to your diet while you take warfarin. Warfarin works best when you eat about the same amount of vitamin K every day. Vitamin K is found in green leafy vegetables and certain other foods. Ask for more information about what to eat when you are taking warfarin.
      • You will need to see your healthcare provider for follow-up visits when you are on warfarin. You will need regular blood tests. These tests are used to decide how much medicine you need.
  • Take your medicine as directed. Contact your healthcare provider if you think your medicine is not helping or if you have side effects. Tell him or her if you are allergic to any medicine. Keep a list of the medicines, vitamins, and herbs you take. Include the amounts, and when and why you take them. Bring the list or the pill bottles to follow-up visits. Carry your medicine list with you in case of an emergency.

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.

Follow up with your healthcare provider as directed:

Write down your questions so you remember to ask them during your visits.

Further information

Always consult your healthcare provider to ensure the information displayed on this page applies to your personal circumstances.

Learn more about Amyloidosis (Discharge Care)

Associated drugs

Symptoms and treatments

Mayo Clinic Reference

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