What type of doctor treats amyloidosis?

Multidisciplinary Care for Amyloidosis

Amyloidosis requires a multidisciplinary team approach, with a hematologist serving as the primary specialist directing anti-plasma cell therapies and coordinating overall care, while cardiologists, nephrologists, and other specialists manage organ-specific complications. 1

Primary Specialist: Hematologist

The hematologist is the central physician managing amyloidosis, responsible for:

• Directing anti-plasma cell therapies and coordinating overall treatment strategy 1
• Interpreting abnormal monoclonal protein screens and guiding diagnostic evaluation 2
• Determining treatment regimens including daratumumab-based combinations, bortezomib protocols, or autologous stem cell transplantation eligibility 1
• Monitoring hematologic response through serial serum free light chain measurements 3
• Assessing plasma cell clone burden and excluding multiple myeloma or B-cell lymphoproliferative disorders 2

Essential Cardiology Involvement

A cardiologist is mandatory for all amyloidosis patients, as cardiac involvement is present in most cases and represents the main driver of mortality 1. The cardiologist's role includes:

• Managing cardiac manifestations including restrictive cardiomyopathy and heart failure 2
• Monitoring for cardiotoxicity during AL amyloidosis therapies, particularly with daratumumab (12% cardiac failure risk), bortezomib (6.4% grade 3 heart failure), and other proteasome inhibitors 1
• Assessing cardiovascular fitness for high-dose melphalan with autologous stem cell transplantation 2
• Evaluating candidacy for heart transplantation and managing post-transplant care 2
• Directing ATTR-specific cardiac therapies when transthyretin amyloidosis is diagnosed 1

Nephrology Consultation

A nephrologist manages kidney involvement, which occurs in approximately 70% of AL amyloidosis patients 2. Responsibilities include:

• Managing nephrotic syndrome with high-grade proteinuria and marked hypoalbuminemia 2
• Addressing progressive loss of kidney function and chronic kidney disease 1
• Interpreting serum free light chain concentrations in the context of kidney impairment 1
• Evaluating for renal transplantation in selected patients 3

Additional Specialists Based on Organ Involvement

Gastroenterology referral is indicated for:

• GI tract involvement, malabsorption, and digestive complications 1
• Significant malnutrition or unexplained weight loss 1
• Severe nausea, vomiting, diarrhea, constipation, or GI bleeding 1

Neurology consultation is required when:

• Peripheral neuropathy with autonomic features is present 2
• Bilateral carpal tunnel syndrome develops 2
• Autonomic nervous system dysfunction occurs 1

Transplant specialists are essential for:

• Evaluation of autologous stem cell transplantation eligibility in AL amyloidosis 1
• Assessment for organ transplantation (heart, kidney) in advanced cases 2, 3
• Sequential heart transplantation followed by stem cell transplantation consideration 2

Palliative care specialists provide:

• Symptom management and quality of life optimization 1
• Support for patients with advanced disease and their caregivers 4

Critical Collaborative Relationships

Close collaboration between hematologists and cardiologists is mandatory for 2:

• Interpretation and evaluation of abnormal monoclonal protein screens (10-40% of ATTR-CM patients have concomitant monoclonal gammopathy) 2
• Continuous monitoring for cardiotoxicity during treatment 2
• Assessment of cardiovascular fitness for intensive therapies 2
• Identification of heart transplantation candidacy and post-transplant management 2

Common Pitfalls in Specialist Care

Delayed diagnosis remains a critical problem due to nonspecific and vague symptoms, making early specialist referral essential 2. Key warning signs requiring immediate evaluation include:

• Restrictive cardiomyopathy or unexplained heart failure 2
• Unexplained proteinuria or nephrotic syndrome 2
• Macroglossia or periorbital purpura 2
• Peripheral neuropathy with autonomic features 2
• Acquired factor X deficiency with coagulopathy 2

Fragmented care without coordination between specialists leads to suboptimal treatment outcomes 1. The multisystem nature of amyloidosis demands integrated management rather than isolated organ-specific approaches 1.

Overlooking cardiac involvement is particularly dangerous, as heart involvement drives prognosis and mortality even when other organs appear more symptomatic 1. Every amyloidosis patient requires cardiac evaluation regardless of presenting symptoms 1.

Failure to differentiate AL from ATTR amyloidosis results in inappropriate treatment, as these conditions require completely different therapeutic approaches 1. Mass spectrometry typing of tissue biopsy is mandatory before initiating disease-specific therapy 1.