What is the definition of Hemophagocytic Lymphohistiocytosis (HLH) in a patient with Systemic Onset Juvenile Idiopathic Arthritis (SOJIA)?

Medical Advisory BoardAll articles are reviewed for accuracy by our Medical Advisory Board
Educational purpose only • Exercise caution as content is pending human review
Article Review Status
Submitted
Under Review
Approved

Last updated: February 2, 2026View editorial policy

Personalize

Help us tailor your experience

Which best describes you? Your choice helps us use language that's most understandable for you.

Definition of HLH in SOJIA Patients

In patients with systemic onset juvenile idiopathic arthritis (SOJIA), HLH is termed Macrophage Activation Syndrome (MAS) and represents a secondary form of hemophagocytic lymphohistiocytosis characterized by excessive immune activation with specific diagnostic criteria. 1

Diagnostic Criteria for MAS in SOJIA

MAS in SOJIA patients is diagnosed using the HLH-2004 criteria, requiring at least 5 of 8 specific findings: 2, 3

  • Fever (persistent, high-grade) 3
  • Splenomegaly 3
  • Cytopenias affecting ≥2 cell lines (anemia, thrombocytopenia, neutropenia) 3, 4
  • Hypertriglyceridemia and/or hypofibrinogenemia 3, 4
  • Hemophagocytosis in bone marrow or other organs 3, 4
  • Low or absent NK cell activity 3
  • Ferritin ≥500 μg/L (typically much higher, often >5,000-10,000 μg/L) 3, 4
  • Elevated soluble CD25 (sIL-2 receptor alpha chain) 3, 4

Key Clinical Features Distinguishing MAS from Active SOJIA

The challenge in SOJIA patients is that MAS shares overlapping features with active disease, making early recognition critical: 1, 4

  • Falling ESR despite rising CRP is a distinctive feature of MAS versus active SOJIA 1
  • Extreme hyperferritinemia (often >10,000 μg/L) disproportionate to disease activity 4
  • Progressive cytopenias despite supportive care 4
  • Hepatic dysfunction with transaminitis and coagulopathy 1, 4
  • Persistent fever unresponsive to typical SOJIA treatments 5, 4

Novel Diagnostic Biomarkers for MAS in SOJIA

Recent evidence identifies promising biomarkers that improve diagnostic accuracy: 1

  • IL-18 (total or free) distinguishes MAS from active SOJIA with high sensitivity and specificity 1
  • CXCL9 (IFN-γ-related biomarker) differentiates MAS from active disease 1
  • Adenosine deaminase 2 (ADA2) activity >25.7 U/L shows excellent diagnostic performance 1
  • Activated CD8 T cells (CD38high/HLA-DR+CD8+ >12.05%) distinguish MAS from active SOJIA 1
  • S100A12 helps differentiate MAS from other forms of HLH 1

Pathophysiology Context

MAS in SOJIA results from uncontrolled activation of cytotoxic T lymphocytes, NK cells, and macrophages, creating a cytokine storm with IFN-γ overproduction as a major driver: 6, 4

  • The syndrome represents dysregulation of innate immunity with inflammasome activation 1
  • IL-1, IL-6, and IL-18 overproduction characterizes the underlying SOJIA pathophysiology 1
  • MAS represents a life-threatening complication requiring immediate recognition and treatment 1, 4

Critical Diagnostic Pitfalls

Do not wait for all 8 HLH-2004 criteria to be met before initiating treatment—empirical therapy should begin when clinical suspicion is high with: 3

  • Ferritin >10,000 μg/L 3
  • Progressive cytopenias 3
  • Persistent fever despite SOJIA treatment 4

Do not confuse MAS with sepsis or active SOJIA flare—key distinguishing features include falling ESR with rising CRP, extreme hyperferritinemia, and hypofibrinogenemia disproportionate to disease activity alone. 1, 4

Hemophagocytosis on bone marrow examination is strongly supportive but NOT required for diagnosis—clinical and laboratory criteria are sufficient. 4

References

Guideline

Guideline Directed Topic Overview

Dr.Oracle Medical Advisory Board & Editors, 2025

Guideline

Hemophagocytic Lymphohistiocytosis (HLH) Causes and Associations

Praxis Medical Insights: Practical Summaries of Clinical Guidelines, 2025

Guideline

Hemophagocytic Lymphohistiocytosis Diagnosis and Management

Praxis Medical Insights: Practical Summaries of Clinical Guidelines, 2026

Research

Macrophage Activation Syndrome.

Indian journal of pediatrics, 2016

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.

Have a follow-up question?

Our Medical A.I. is used by practicing medical doctors at top research institutions around the world. Ask any follow up question and get world-class guideline-backed answers instantly.