What are the causes of cold agglutinin disease?

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Last updated: February 27, 2026View editorial policy

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Causes of Cold Agglutinin Disease

Cold agglutinin disease is caused by a clonal B-cell lymphoproliferative disorder that produces monoclonal IgM autoantibodies, and can be classified as either primary (idiopathic) or secondary to underlying conditions such as lymphomas, infections, or autoimmune diseases. 1, 2

Primary Cold Agglutinin Disease

Primary CAD represents an indolent clonal B-cell lymphoproliferative disorder where monoclonal B-lymphocytes in the bone marrow produce pathogenic cold agglutinins. 3, 4

  • A monoclonal CD20+ B-lymphocyte population is demonstrable in the bone marrow of 90% of patients with primary CAD, with lymphoplasmacytic lymphoma being a frequent histologic finding. 4
  • The clonal B cells produce monoclonal IgM autoantibodies, most commonly of the IgMκ class, with heavy chain variable regions encoded by the V(H)4-34 gene segment. 3, 4
  • Recent molecular studies have identified mutations in CARD11 and KMT2D genes in a high proportion of patients with CAD, establishing it as a distinct lymphoproliferative entity rather than purely autoimmune. 5
  • Primary CAD accounts for approximately 50% of all cold agglutinin disease cases and occurs in the absence of any identifiable underlying condition. 2

Secondary Cold Agglutinin Syndrome (CAS)

Secondary CAS develops in association with underlying diseases that must be actively investigated and treated. 1, 6

Lymphoproliferative Disorders

  • Waldenström's macroglobulinemia is a key association, where cold agglutinin disease can be a presenting manifestation requiring evaluation for organomegaly, hyperviscosity, and neuropathy. 7
  • Chronic lymphocytic leukemia (CLL) can present with CAS even in early phases without lymphocytosis or lymphadenopathy, potentially being misinterpreted as primary CAD. 5
  • Diffuse large B-cell lymphoma and other low-grade lymphomas are recognized causes of secondary CAS. 8
  • The American Society of Hematology recommends ruling out underlying lymphoproliferative disorders as secondary causes requiring specific treatment. 1

Infectious Causes

  • Mycoplasma pneumoniae and other atypical infections can trigger transient cold agglutinin production. 1
  • Viral infections including hepatitis C should be screened, particularly when cryoglobulinemia is suspected. 7

Autoimmune Conditions

  • Systemic autoimmune diseases can be associated with secondary cold agglutinin syndrome and should be evaluated when AIHA is diagnosed. 1, 2

Pathophysiologic Mechanism

Regardless of primary or secondary etiology, the disease mechanism involves:

  • IgM autoantibodies bind to red blood cell surface antigens (typically the "I" antigen) at temperatures below 37°C. 6, 9
  • This binding triggers complement classical pathway activation, resulting in C3b opsonization of erythrocytes. 3
  • Extravascular hemolysis occurs predominantly in the liver (not the spleen as in warm AIHA), producing chronic anemia with elevated LDH, low haptoglobin, elevated indirect bilirubin, and reticulocytosis. 1, 3
  • The direct antiglobulin test (Coombs) is positive for C3 complement with or without IgM. 1, 2

Critical Diagnostic Pitfall

Early-phase CLL with small clonal populations (as low as 6.8% bone marrow infiltration) can present as apparent "primary" CAD without lymphocytosis or lymphadenopathy, emphasizing the need for thorough bone marrow evaluation and molecular testing when CAD is diagnosed. 5 The presence of CARD11 and KMT2D mutations with IGHV4-34 overrepresentation suggests underlying CLL even in the absence of typical CLL features. 5

References

Guideline

Clinical Significance of Cold Agglutinins in Pregnancy

Praxis Medical Insights: Practical Summaries of Clinical Guidelines, 2026

Guideline

Autoimmune Hemolytic Anemia Guidelines

Praxis Medical Insights: Practical Summaries of Clinical Guidelines, 2025

Research

Cold agglutinin disease: where do we stand, and where are we going?

Clinical advances in hematology & oncology : H&O, 2020

Guideline

Diagnostic and Treatment Approach for Cold and Warm Autoimmune Hemolytic Anemia

Praxis Medical Insights: Practical Summaries of Clinical Guidelines, 2026

Guideline

Guideline Directed Topic Overview

Dr.Oracle Medical Advisory Board & Editors, 2025

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Professional Medical Disclaimer

This information is intended for healthcare professionals. Any medical decision-making should rely on clinical judgment and independently verified information. The content provided herein does not replace professional discretion and should be considered supplementary to established clinical guidelines. Healthcare providers should verify all information against primary literature and current practice standards before application in patient care. Dr.Oracle assumes no liability for clinical decisions based on this content.

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