Amyloidosis

Overview

Different types of amyloidosis affect different organs. Heart amyloid can cause heart failure; kidney amyloid can cause protein in urine.

New treatments can slow some types.

Symptoms

Common signs:

• Tiredness, swelling

Less common

• Numbness
• Shortness of breath
• Enlarged tongue
• Easy bruising around eyes

Look up a symptom: Fatigue · Losing weight without trying · Numb or tingling leg or foot · Swollen ankles, feet, or both legs

When to get medical care

Causes

Protein buildup.

Does it spread or run in families?

• It isn't contagious. You can't catch it from someone else.

Who is more likely to get it

• Older adults

Possible complications

• Heart failure: From stiff heart muscle
• Kidney damage: Protein in the urine

Diagnosis

A clinician asks about your symptoms and may order tests.

The exam

A physical exam.

Tests

Tests, if needed:

• Biopsy:

Treatment

Treatment depends on the cause and how severe it is.

Self-care

• Limit salt
• Pace activities

Prevention

To lower your risk or prevent problems:

• Genetic counseling for inherited types

Which doctor treats this

• Start with your primary care provider (family doctor or internist).
• They may send you to a hematologist (blood doctor) or a cardiologist (heart doctor).

Living with it

Support groups and helplines

• Genetic and Rare Diseases Information Center (GARD): Free NIH information on rare diseases, including where to find experts and patient groups.
• National Organization for Rare Disorders (NORD): Patient groups, help finding care, and aid programs for rare diseases.

Children, pregnancy, and older adults

• Older Black adults: A genetic heart type is more common.

Pregnancy and breastfeeding

• If you're pregnant or planning to be, tell your prenatal provider about this condition.
• Don't start or stop any medicine on your own. Some are safe in pregnancy and some need to be changed.
• Ask before taking any pain reliever. The FDA advises avoiding ibuprofen and naproxen after 20 weeks unless your doctor says to.
• Breastfeeding: Most medicines are fine, but ask. The NIH LactMed database lists what's known about each one.

Outlook

Treatment is improving.

Treatment can slow it.

Getting ready for your visit

Bring a list of your symptoms and medicines.

What to bring

• A list of your medicines and supplements
• Notes on when symptoms started and what makes them better or worse

Questions to ask

• What's causing this?
• What treatment do you recommend?
• Which type do I have?

Research studies

Research studies test new ways to find and treat health problems. Some are looking for volunteers. Talk with your doctor before joining one.

Search ClinicalTrials.gov for studies on Amyloidosis