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Locations and how to schedule

Initial outpatient consultations can be scheduled at office locations in Alexandria, Fairfax or Loudoun. To schedule, call 703-766-5847 or email amyloid@inova.org.

A team of experts focused on specialized care

The Inova Amyloidosis Program provides comprehensive management of this complex, multifaceted condition. Once considered rare, understanding of amyloidosis has evolved with recent advancements in diagnostic tools, revealing it as is more common than previously thought.

Inova’s coordinated approach to a multifaceted condition

We help patients navigate this condition using a multispecialty, coordinated approach, ensuring that patients have access to the care and support they need. The Inova Amyloidosis Program focuses on comprehensive patient care, facilitated by a patient care coordinator who ensures efficient arrangements for all necessary tests and consultations. The coordinator works closely with the program physicians to ensure integration of results that capture all dimensions of a patient’s condition and results in an organized plan of care.

Considering the potential role in heart failure, the program works closely with Inova's advanced heart failure team. This multifaceted approach is supported by a multispecialty team, including specialists in:

  • Cardiology
  • Advanced heart failure
  • Cardiac imaging
  • Neurology
  • Nephrology
  • Hematology/oncology
  • Palliative care
  • Pathology

  • History of hypertension, now with low blood pressure despite lowering medications
  • Swelling in the lower legs
  • Irregular heartbeat
  • Fatigue
  • Unexplained weight loss
  • Orthopedic symptoms such as spinal stenosis, biceps tendon rupture, trigger finger and carpal tunnel syndrome
  • Numbness or tingling sensations in the arms and legs
  • Presence of floaters in the eyes
  • Unexplained bruising
  • Foamy urine

Diagnosis

Most often laboratory tests and imagining can lead to the diagnosis, rarely requiring a biopsy.

Analyses can be conducted on blood and urine samples to identify the presence of abnormal proteins indicative of amyloidosis. Additionally, individuals with specific symptoms may require further evaluations to assess their thyroid and kidney function.

Genetic testing is also essential, as a significant portion of amyloidosis can be inherited amongst specific populations such as Portuguese, African American, Italian, and Irish.

All of these studies are not required to diagnose, but often, this involves reviewing old studies or obtaining additional imaging to include: 

  • Echocardiography with strain, an ultrasound to look at the structure and function of your heart 
  • Nuclear cardiac scans with a dedicated radiotracer to diagnose infiltration of the heart by transthyretin amyloidosis
  • Cardiac MRI to evaluate both structure and function and tissue characterization

In some select cases a biopsy from the heart may be diagnostic. Tissues samples from an already planned carpal tunnel surgery or spine surgery can be helpful. At times an abdominal fat pad biopsy or bone marrow biopsy may assist in the diagnosis.

Treatment options

Cardiac amyloidosis is dominated by two types: AL, which can be seen with hematologic malignancies such as multiple myeloma requiring chemotherapy. More often, it involves a protein (transthyretin, or TTR for short), which can be associated with age or an inherited condition. Although amyloidosis lacks a definitive cure, a range of treatments depends on the involvement of the specific organ.

Heart medications: Cardiologists will use specific cardiac medications to treat and control symptoms if the heart is impacted.

TTR Targeted therapies: Medications such as tafamidis (Vyndamax®, Vyndaqel®) are oral agents that improve survival by stabilizing protein fragments in the bloodstream, preventing their conversion into amyloid deposits. It is not uncommon for amyloidosis to spread to the nerves, which also has targeted therapies. Specific amyloidosis variants benefit from gene silencers patisiran (Onpattro®), vutrisiran (Amvuttra®), and inotersen (Tegsedi®), which are FDA-approved for neuropathy and interfere with faulty gene commands contributing to amyloid creation.

The chemotherapy medication Daratumumab (Darzalex®) is utilized in light-chain amyloidosis to halt the growth of abnormal cells responsible for producing amyloid-forming proteins.

Other organs such as kidney, GI or bone marrow require their own therapies. Inova has access to advanced chemotherapy and autologous blood stem cell transplants, organ transplantation and dialysis.