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AA Amyloidosis and Other Rare Types

If you have an autoimmune disease, you experience inflammation that comes and goes. When standard treatments fail to help you feel better, it could be a sign of a rare disorder called AA amyloidosis.

At the Washington University Amyloid Center, you are in capable hands. We are among a select number of centers nationwide with expertise in diagnosing and treating this condition. We have the skill and experience to deliver care that helps you get much-needed relief.

What Is AA Amyloidosis?

Amyloidosis occurs when your body produces abnormal levels of a protein called amyloid. AA amyloidosis is one of many forms of the disease and develops in people with an autoimmune disease.

At certain times, your body responds to chronic inflammation by creating specific proteins to fight the inflammation. These proteins can develop into amyloid proteins and result in amyloidosis. Typically, when doctors treat the source of inflammation, the body stops making these proteins.

However, with autoimmune disease, your body continuously produces the proteins. Amyloidosis happens when some of these amyloid proteins build up in your organs. Over time, these deposits make it hard for your organs to function and may lead to organ failure.

AA Amyloidosis Care: Why Choose Us?

AA amyloidosis symptoms can affect multiple organs, which is why we use a team approach to care. You receive care from nationally recognized doctors from many specialties, including heart and kidney disease. We work together to help improve your well-being. Meet our team.
        
You benefit from:

  • Precise diagnosis: Our expert pathologists use lab tests to detect and analyze subtle abnormalities in your cells. These findings enable us to confirm or rule out AA amyloidosis with a high degree of accuracy. And when you receive an accurate diagnosis, you get effective care right from the start.
  • Latest treatments: Research advances at Washington University School of Medicine are uncovering new treatments that help improve the lives of people with AA amyloidosis. Our participation in clinical trials gives you access to care options that are only available in select programs nationwide.
  • Coordinated care: We work alongside autoimmune disease specialists. You may receive care from experienced gastroenterologists, who specialize in digestive diseases, or rheumatologists, who focus on arthritis. You may also see specialists in cardiology, neurology and kidney care (nephrology). We share important information with each other about your test results, so you receive the treatments that meet your needs.

Autoimmune Diseases That Cause AA Amyloidosis

Autoimmune diseases that can lead to an AA amyloidosis diagnosis include:

  • AIDS
  • Crohn's disease
  • Cystic fibrosis
  • Hodgkin lymphoma
  • Renal cell carcinoma
  • Rheumatoid arthritis
  • Ulcerative colitis

AA Amyloidosis Symptoms

The symptoms you experience depend on where the amyloid deposits occur. 

Amyloid deposits may affect your:

Heart

If amyloid deposits form in your heart, you may experience: 

Kidneys

Deposits of amyloid in your kidneys may lead to a condition called nephrotic syndrome.

Nephrotic syndrome may cause:

  • Protein in your urine
  • Kidney failure
  • Swelling in your ankles and legs

Nerves

Amyloid buildups can lead to nerve damage, resulting in:

  • Dizziness when moving from a seated to a standing position
  • Digestive problems, including diarrhea or constipation

Other Organs

Amyloidosis can cause inflammation and pain in other organs, including your:

  • Spleen
  • Liver
  • Thyroid

AA Amyloidosis Diagnosis

We ask you about your health history and symptoms so we can determine which tests you need. 

Tests we use to diagnose AA amyloidosis include:

  • 24-hour urine test: For 24 hours, you deposit all of your urine in a special container. Our team tests your urine for traces of protein, looking for signs of nephrotic syndrome.
  • Biopsy: If you test positive for nephrotic syndrome, we use a biopsy to confirm or rule out AA amyloidosis. We take a tissue sample from your kidneys and examine it under a microscope.
  • Organ function testing: If you have signs of heart damage, we may use imaging tests such as a cardiac ultrasound to see how amyloid buildups are affecting your heart. Your care may also include tests to assess how the deposits are affecting your kidneys.

Additional Testing for AA Amyloidosis

An underlying condition is one medical condition that causes another one. With AA amyloidosis, the underlying condition is an autoimmune disease.

If you test positive for amyloidosis and do not have an autoimmune disease diagnosis, we perform additional tests to identify the underlying condition. For example, if you have stomach pain, we may test for Crohn’s disease or ulcerative colitis.

AA Amyloidosis Treatment

There is no cure for AA amyloidosis. However, the right care plan can help you manage your symptoms so you can live your life.

Effective care for AA amyloidosis includes treatments to control inflammation from the underlying condition. In many cases, your care includes medications.

Our amyloidosis team may also provide supportive care to help you cope with the symptoms of amyloid buildups. If you are having kidney problems, we may recommend diet changes, such as lowering your salt intake, to avoid further organ damage.

Contact Us

To make an appointment with a Washington University amyloidosis specialist at Barnes-Jewish Hospital, call 888.969.4806.

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