How do I know if I have Castleman disease?

Castleman disease is a rare lymphoproliferative disorder that often presents as enlarged lymph nodes, systemic inflammation, or flu-like symptoms. Because it can mimic other conditions, diagnosis typically requires a combination of imaging (CT/PET scans), blood work, and a definitive lymph node biopsy to confirm the specific subtype.

What are the early signs of Castleman disease?

The clinical presentation of Castleman disease varies significantly depending on whether it is unicentric (affecting a single lymph node region) or multicentric (affecting multiple regions). Unicentric Castleman disease is often asymptomatic or causes localized pressure, while multicentric Castleman disease frequently causes systemic symptoms such as persistent fevers, night sweats, unexplained weight loss, and severe fatigue. Many of our 59 community members at DiseaseMaps.org initially mistook these symptoms for a common viral infection before seeking specialized care.

How is Castleman disease diagnosed?

There is no single blood test that identifies Castleman disease. Instead, clinicians use a diagnostic pathway to rule out infections, autoimmune disorders, and lymphomas. Key diagnostic steps include:

• Imaging: CT or PET scans to locate enlarged lymph nodes.


• Laboratory Tests: Checking for elevated inflammatory markers like C-reactive protein (CRP) or Interleukin-6 (IL-6).


• Histopathology: A surgical biopsy of the affected lymph node is the only way to confirm a Castleman disease diagnosis.

When should I see a doctor and what are the red flags?

If you have persistent lymphadenopathy (swollen glands) lasting more than 2–3 weeks, or if your systemic symptoms like high fevers and night sweats do not resolve, consult your primary care physician. Seek urgent medical attention if you experience difficulty breathing, sudden severe abdominal pain, or rapid, unexplained weight loss. When speaking to your doctor, clearly document the duration of your symptoms and ask specifically if a lymph node biopsy or referral to a hematologist-oncologist is warranted to investigate potential Castleman disease.

How can I advocate for myself?

If your concerns are dismissed, bring printed clinical summaries from reputable sources like the Castleman Disease Collaborative Network to your appointment. Request a second opinion from a hematologist familiar with rare lymphoproliferative disorders. You are your own best advocate; if symptoms persist, do not hesitate to seek a specialist who has experience with complex, rare conditions.

Next steps

• Schedule an appointment with a hematologist or an oncologist.


• Keep a symptom diary to track the frequency of fevers and fatigue.


• Join the 59 members on DiseaseMaps.org to share experiences and learn from others living with Castleman disease.

Medical disclaimer: This information is for educational purposes only and does not replace professional medical advice, diagnosis, or treatment.

References

• NIH Genetic and Rare Diseases Information Center (GARD): Castleman Disease


• Orphanet: Multicentric Castleman Disease


• Castleman Disease Collaborative Network (CDCN)


• PubMed: Diagnostic criteria for Idiopathic Multicentric Castleman Disease