What are the diagnosis and treatment options for Hemophagocytic Lymphohistiocytosis (HLH)?

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Diagnosis and Treatment of Hemophagocytic Lymphohistiocytosis (HLH)

Early recognition and prompt treatment of HLH with a combination of corticosteroids, immunosuppressants, and targeted therapy against underlying triggers is essential to prevent irreversible organ damage and death. 1

Diagnostic Criteria

HLH is diagnosed using the HLH-2004 criteria, which requires either:

  • Molecular diagnosis consistent with HLH (genetic testing) OR
  • Fulfillment of 5 of the 8 following criteria 2:
    • Fever (≥38.5°C) 2
    • Splenomegaly 2
    • Cytopenias affecting ≥2 cell lines:
      • Hemoglobin <9 g/dL
      • Platelets <100,000/μL
      • Neutrophils <1,000/μL 2
    • Hypertriglyceridemia (≥265 mg/dL) and/or hypofibrinogenemia (≤150 mg/dL) 2
    • Hemophagocytosis in bone marrow, spleen, lymph nodes, or liver 2
    • Low or absent NK cell activity 2
    • Ferritin ≥500 ng/mL (often much higher) 2
    • Elevated soluble CD25 (≥2400 U/mL) 2

Important Diagnostic Considerations

  • Hemophagocytosis alone is neither sensitive nor specific for HLH and may be present in other conditions like sepsis 2
  • HLH can present with a phenotype indistinguishable from sepsis or multiple organ dysfunction syndrome 1
  • Meticulous search for underlying triggers, including occult malignancies, is essential 1

Classification of HLH

HLH is classified into two main types:

  • Primary (genetic) HLH:

    • Most common in children but can occur in adolescents and young adults 1
    • Caused by mutations affecting lymphocyte cytotoxicity and immune regulation 1
    • Requires hematopoietic stem cell transplantation (HSCT) for cure 3
  • Secondary (acquired) HLH:

    • Most common in adults 1
    • Triggered by:
      • Infections 1
      • Malignancies (particularly lymphomas) 1
      • Autoinflammatory/autoimmune disorders (called MAS-HLH) 1
      • Novel immunotherapies 1

Treatment Approach

General Principles

  1. Treat the underlying cause while simultaneously initiating HLH-directed therapy 4
  2. First-line treatment: High-dose corticosteroids (methylprednisolone 1g/day for 3-5 consecutive days) 4
  3. Second-line treatment: Based on clinical response and HLH subtype 4

Treatment by HLH Subtype

Primary HLH

  • Etoposide-based protocols (HLH-94 or HLH-2004) 3, 5
  • Hematopoietic stem cell transplantation (HSCT) is essential for cure 3

Malignancy-Associated HLH

  • Combined approach with HLH-directed and malignancy-directed therapy 1
  • Etoposide-containing regimens show better survival compared to treatment directed only at underlying pathology 1
  • Consider stem cell transplantation as consolidation 1
  • T-cell lymphoma-associated HLH has worse prognosis than B-cell lymphoma-associated HLH 1, 2

MAS-HLH (Autoimmune/Autoinflammatory)

  • High-dose pulse methylprednisolone (1 g/day for 3-5 consecutive days) 1
  • Add cyclosporine A (2-7 mg/kg/day) for insufficient response 1
  • IL-1 blocking therapy with anakinra (2-10 mg/kg/day SC in divided doses) 1, 4
  • Anti-IL-6 blockade with tocilizumab may be considered 1

HLH During Chemotherapy

  • Postpone subsequent chemotherapy blocks or interrupt maintenance therapy 1
  • Rigorously treat infectious triggers 1
  • Anti-infectious prophylaxis (anti-fungal, pneumocystis jiroveci) 1
  • Regular surveillance for secondary infections or reactivations (aspergillus, EBV, CMV) 1

Emerging Therapies

  • Ruxolitinib (JAK1/2 inhibitor) 1, 4
  • Emapalumab (anti-IFN-γ monoclonal antibody) 1, 4
  • Alemtuzumab (anti-CD52) 1, 4

Prognosis and Monitoring

  • Frequent clinical reassessment (at least every 12 hours) and monitoring of inflammatory parameters and organ function 4
  • Malignancy-associated HLH has poor prognosis:
    • 30-day survival: 56-70% 1
    • Median overall survival: 36-230 days 1
    • 3-year survival: 18-55% depending on subtype 1
  • Factors associated with higher mortality:
    • Shock at ICU admission 4
    • Platelet count <30 g/L 4
    • HLH associated with malignancies 4

Common Pitfalls to Avoid

  • Delayed diagnosis and treatment significantly increases mortality 4
  • Direct application of pediatric protocols without adjustments for adults 1
  • Inadequate treatment of underlying triggers 4
  • Overreliance on hemophagocytosis as a diagnostic criterion 2
  • Failure to consider HLH in patients presenting with sepsis-like syndrome 1

References

Guideline

Guideline Directed Topic Overview

Dr.Oracle Medical Advisory Board & Editors, 2025

Guideline

Diagnostic and Treatment Parameters for Hemophagocytic Lymphohistiocytosis (HLH)

Praxis Medical Insights: Practical Summaries of Clinical Guidelines, 2025

Research

Hemophagocytic lymphohistiocytosis: pathogenesis and treatment.

Hematology. American Society of Hematology. Education Program, 2013

Guideline

HLH Treatment Guidelines

Praxis Medical Insights: Practical Summaries of Clinical Guidelines, 2025

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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