Amyloidosis is a rare condition with symptoms that mirror common medical problems. It occurs when deposits of abnormal protein form a substance called amyloid. The substance may collect in your organs, causing damage. You may feel run down or experience an infection such as the flu. But if symptoms don’t go away, it could signal a more serious problem.
The Washington University Amyloid Center delivers an exceptional level of care. We provide a timely diagnosis and effective treatments, helping many people feel better. These capabilities are one reason why people from across the St. Louis region put their trust in us.
Types of Amyloidosis We Treat
We treat all types of amyloidosis, including rare forms for which researchers are still determining the best approach to care.
Types of amyloidosis we treat include:
Do I Need an Amyloidosis Evaluation?
You may not notice early amyloidosis symptoms because amyloid deposits occur gradually. If you have a family history of amyloidosis, your doctor may recommend an evaluation.
You may also need an evaluation if you have any of these symptoms, and standard treatments fail to relieve them:
- Abnormal swelling and inflammation
- Fainting or dizziness
- Heart problems, such as a rapid or slow heartbeat (arrhythmia)
- Nerve damage
- Protein in the urine
- Unexplained weight loss
Amyloidosis Diagnosis: What to Expect
We diagnose amyloidosis using a personalized evaluation. We coordinate tests based on your symptoms as well as your overall health history.
These tests may include:
- Genetic testing: We recommend genetic testing if you have a family history of TTR amyloidosis. This form of amyloidosis runs in families. Testing helps you learn whether you are at risk for the condition before you start experiencing symptoms.
- 24-hour urine test: This test confirms whether you have signs of kidney dysfunction, such as protein in your urine. You deposit all of your urine over 24 hours in a special container. We run tests to check for different types of protein.
- Biopsy: We take a tissue sample from organs with amyloid deposits and examine it under a microscope. This test helps us confirm an amyloidosis diagnosis with a high degree of accuracy. We may also biopsy your kidney, heart, nerves or bone marrow, the tissue inside your bones.
- Imaging tests: We may use imaging tests such as an ultrasound to assess possible organ damage from amyloid deposits. Ultrasound uses a hand-held device and sound waves to create detailed images of your organs.
While amyloidosis has no cure, the right combination of treatments can help you feel better. Treatments may slow the buildup of amyloid in your organs. Supportive care can relieve symptoms of problems that are due to amyloid deposits.
Your personalized care plan depends on your diagnosis and symptoms and may include:
- Medications: You may receive a combination of amyloidosis medications. For AL amyloidosis, your care may also include chemotherapy and steroids.
- Supportive care: These treatments help you get relief from symptoms of amyloidosis. If you experience an arrhythmia, our cardiologists provide medications and procedures to fix it. If you have kidney damage, we may recommend dialysis to help with kidney function.
- Organ or bone marrow transplant: A transplant replaces damaged organs or tissue with healthy ones.
- You may need an organ transplant if you experience organ failure, meaning the organ can no longer do its job. Read more about our Transplant Center.
- If you have AL amyloidosis, your care may include a bone marrow transplant to replenish healthy bone marrow.
Amyloidosis Support Group
An amyloidosis diagnosis can bring challenges affecting your emotions, health and daily life. But with the Barnes Jewish Amyloidosis Support group, you won’t face these problems alone. We host regular meetings where you receive helpful information from our amyloidosis experts and share experiences with other patients. Our amyloidosis support group meets every three months.
Amyloidosis Patient Support Meetings
Center for Advanced Medicine
4921 Parkview Place, 3rd Floor
Farrell Conference Room #2
St. Louis, MO 63110
March 10, 2020 1-3pm
June 9, 2020 1-3pm
September 8, 2020 1-3pm
December 1, 2020 1-3pm
To make an appointment with a Washington University amyloidosis specialist at Barnes-Jewish Hospital, call 888.969.4806.