What is Hemophagocytic Lymphohistiocytosis (HLH)?

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Last updated: September 8, 2025View editorial policy

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Hemophagocytic Lymphohistiocytosis (HLH)

HLH is a severe, potentially life-threatening hyperinflammatory syndrome characterized by excessive and uncontrolled activation of macrophages and cytotoxic T lymphocytes that can rapidly progress to multi-organ failure if not promptly diagnosed and treated. 1

Classification

  • Primary (genetic) HLH:
    • More common in children
    • Caused by mutations affecting lymphocyte cytotoxicity and immune regulation 1
  • Secondary (acquired) HLH:
    • Predominant in adults
    • Triggered by infections, malignancies, autoimmune disorders, or complications of therapies such as CAR-T 1

Diagnostic Criteria (HLH-2004)

Requires molecular diagnosis compatible with HLH OR at least 5 of 8 criteria:

  1. Fever
  2. Splenomegaly
  3. Cytopenias (affecting ≥2 cell lines)
  4. Hypertriglyceridemia and/or hypofibrinogenemia
  5. Hemophagocytosis in bone marrow, spleen, or lymph nodes
  6. Low or absent NK cell activity
  7. Ferritin ≥500 ng/mL (levels >10,000 μg/L are highly specific in children)
  8. Elevated soluble CD25 (sCD25 ≥2400 U/mL) 1

Key Laboratory Markers

  • Ferritin: Often markedly elevated, though less specific in adults than children 1
  • Soluble IL-2 receptor (sCD25): Superior diagnostic performance compared to ferritin (AUC 0.90 vs 0.78) 1

Clinical Course and Prognosis

Without early treatment, HLH is rapidly fatal, with >10% of patients dying within two months of diagnosis. Complications include:

  • Visceral organ hemorrhage
  • Opportunistic infections due to neutropenia
  • Multi-organ failure 1

Treatment Approach

Treatment must be initiated rapidly and includes:

  1. Treating the underlying trigger
  2. Controlling hyperinflammation using HLH-94 or HLH-2004 protocols
  3. Providing supportive care 1

Delay in treatment beyond 6 days is associated with significantly worse outcomes, including higher in-hospital mortality (OR 2.00), circulatory shock, mechanical ventilation requirements, and organ failure 2.

Important Considerations

  • Diagnosis may be challenging due to HLH's rarity and variable presentation 3
  • HLH-2004 criteria were developed for children and are not validated for adults 1
  • Expert consultation is recommended for correct interpretation of clinical, functional, and genetic findings 4

References

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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