Castleman Disease

New Castleman disease research, summarized each month in plain language.

2026 so far: So far in 2026 (January 2026 to September 2026), the most consistent reports supported complete surgery for unicentric disease and real-world responses to IL-6 blockers in iMCD, alongside early reports on alternatives and on how to interpret lab monitoring during treatment. Read the 2026 review

We also cover clinical trials.

Yearly update

2026 so far

January–September
  • Surgery for unicentric disease. Multiple series and cases pointed to long-lasting local control.
  • IL-6 blockers in iMCD. Real-world cohorts and registry data helped set expectations for response.
  • Stopping and restarting therapy. Stopping treatment was reported, with relapse clustered early.
  • Interpreting IL-6 and CRP. Retrospective studies explained why IL-6 results can be confusing.
  • Options beyond IL-6 blockade. Small studies and single cases tried JAK, mTOR, and IL-1 approaches.
New

September 2026

Monthly research update
  • Unicentric tumor removal. After full removal, scans often showed no return.
  • Minimally invasive surgery. Scope-based surgery removed masses that scans suggested were cancer.
  • IL-6 blocking treatment. IL-6 blockers often improved symptoms and blood test results.

August 2026

Monthly research update
  • IL-6 blocker response. In routine care, many people with iMCD had partial improvement.
  • Sirolimus after IL-6. In one person, sirolimus lowered several immune-related blood proteins.
  • Kidney injury pattern. Kidney measures often improved after treating the underlying iMCD.
  • Lymph node tissue. A larger lymph node sample sometimes enabled diagnosis.

July 2026

Monthly research update
  • Surgery follow-up. After complete removal, no recurrence was reported during follow-up.
  • Radiation response. One unresectable case shrank after radiotherapy and breathing improved.
  • Severe TAFRO course. TAFRO stayed hard to control despite several immune-targeting drugs.
  • HHV-8 viral load. HHV-8 levels sometimes changed along with disease activity.

June 2026

Monthly research update
  • Case-by-case remissions. Some single-patient reports described remission after complex treatment combinations.
  • Surgery results. After complete removal, unicentric disease often did not return locally.
  • IL-6 and CRP trends. On IL-6 blockers, IL-6 may rise while CRP falls.
  • CT scan patterns. CT patterns may help suggest subtypes, but evidence is limited.

May 2026

Monthly research update
  • Diagnosis needs biopsy plus broad testing. In several reports, Castleman disease was clarified from similar-looking conditions only after tissue biopsy plus wider blood tests and imaging.
  • HHV-8 blood test for monitoring. A validated HHV-8 blood test may help standardize how viral levels are measured over time.
  • IL-6 blockers and rituximab in reports. Across guidelines and case reports, IL-6–blocking medicines and rituximab were associated with improvement in some multicentric cases.
  • Surgery for a single localized mass. For unicentric disease, removing one localized mass helped confirm the diagnosis on pathology and was followed by symptom relief or disease-free follow-up in case reports.

April 2026

Monthly research update
  • Early iMCD lab changes. In a small comparison, two immune-targeting drugs lowered many measured immune signals in the blood.
  • Lab changes vs symptoms. Drops in blood markers did not consistently match how people reported feeling.
  • Biopsy for diagnosis. Biopsy and tissue testing remained central when Castleman disease can resemble other conditions.

March 2026

Monthly research update
  • IL-6 blocker in routine care. In real-world iMCD care, siltuximab use was often followed by disease control.
  • Short-term support in severe flares. In some fast, severe flares, clinicians used temporary “bridging” support before longer-term treatment took effect.
  • Kidney vs platelet recovery in TAFRO. In TAFRO, kidney function sometimes improved before platelet counts recovered.
  • Standardized lymph node grading. A proposed grading method aimed to make lymph node biopsy findings in iMCD more consistent across readers and centers.

February 2026

Monthly research update
  • Surgery for unicentric disease. Across reports, fully removing a localized unicentric Castleman disease mass was linked to long periods without the disease coming back, including when the mass was deep (such as in the retroperitoneum).
  • Small studies in multicentric disease. Multicentric Castleman disease evidence this month came from small, mixed reports by subtype, including five idiopathic cases with one-year follow-up where filgotinib was described as tolerable and some people improved.
  • Diagnosis needs tissue. Imaging sometimes raised suspicion for Castleman disease, but several localized masses resembled other tumors, so diagnosis in reported cases relied on tissue examination after biopsy or surgery.

January 2026

Monthly research update
  • Options after IL-6 blockers. When iMCD or TAFRO did not improve with IL-6–blocking treatment, small reports described trying other immune pathway blockers, but these are early signals rather than settled answers.
  • Stopping therapy in iMCD-TAFRO. After inflammation lab tests fully normalized in iMCD-TAFRO, most people in one report stayed in biochemical remission after stopping therapy, while a smaller group relapsed within about a year and improved again with retreatment.
  • Kidney involvement patterns. Kidney involvement was reported more often in multicentric than unicentric Castleman disease, biopsies often showed small-vessel injury, and one cohort did not show a clear overall survival difference based on kidney involvement.
  • Genetics and immune targets. Early research linked MEFV gene variants to more severe TAFRO and described antibodies that can block KSHV infection in certain cells, but these are not routine tests or treatments.

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