Revisiting clinical response and refractoriness in immune thrombotic thrombocytopenic purpura

L Lucas Kühne (1Department II of Internal Medicine and Center for Molecular Medicine Cologne, Faculty of Medicine and University Hospital Cologne, University of Cologne, Cologne, Germany) T Thomas Osterholt (1Department II of Internal Medicine and Center for Molecular Medicine Cologne, Faculty of Medicine and University Hospital Cologne, University of Cologne, Cologne, Germany) M Maximilian Suer (1Department II of Internal Medicine and Center for Molecular Medicine Cologne, Faculty of Medicine and University Hospital Cologne, University of Cologne, Cologne, Germany) S Sadrija Cukoski (1Department II of Internal Medicine and Center for Molecular Medicine Cologne, Faculty of Medicine and University Hospital Cologne, University of Cologne, Cologne, Germany) R Ralph Wendt C Christian Pfrepper (4Division of Hemostaseology, Department of Hematology, Cellular Therapy, Hemostaseology and Infectiology, University of Leipzig Medical Centre, Leipzig, Germany) S Sirak Petros (4Division of Hemostaseology, Department of Hematology, Cellular Therapy, Hemostaseology and Infectiology, University of Leipzig Medical Centre, Leipzig, Germany) U Ulf Schönermarck (5Nephrology Division, Department of Medicine IV, University Hospital LMU Munich, Munich, Germany) A Anke von Bergwelt-Baildon (5Nephrology Division, Department of Medicine IV, University Hospital LMU Munich, Munich, Germany) J Jessica Kaufeld (6Department of Nephrology and Hypertension, Hannover Medical School, Hannover, Germany) A Anja Gäckler (7Department of Nephrology, University Hospital Essen, University of Duisburg-Essen, Essen, Germany) K Kristina Schönfelder (7Department of Nephrology, University Hospital Essen, University of Duisburg-Essen, Essen, Germany) F Felix S. Seibert M Matthias Masla (9Department of Internal Medicine and Nephrology, Herz-Jesu-Hospital Münster-Hiltrup, Münster-Hiltrup, Germany) J Jörn Bramstedt (10Medizinische Klinik II Sektion Nephrologie, Klinikum Bremerhaven Reinkenheide, Bremerhaven, Germany) V Vedat Schwenger (11Department of Nephrology, Klinikum Stuttgart, Stuttgart, Germany) E Evelyn Seelow (12Department of Nephrology and Intensive Care Medicine, Charité Universitätsmedizin Berlin, Berlin, Germany) A Anja Mühlfeld (13Division of Nephrology, Department of Medicine, Uniklinik RWTH Aachen, Aachen, Germany) M Martin Bommer (14Alb-Fils-Klinikum Göppingen, Klinik für Hämatologie, Onkologie, Infektiologie und Palliativmedizin, Göppingen, Germany) T Tilmann Schmidt (15Section of Nephrology, Clinic and Policlinic of Internal Medicine A, University Medicine Greifswald, Greifswald, Germany) M Marcus Brand (16General Internal Medicine and Emergency Department, Nephrology, Hypertension and Rheumatology, University Hospital Münster, Münster, Germany) V Victor Walendy (17Department of Internal Medicine II, Universitätsmedizin (Halle), Medical Faculty of the Martin-Luther-University Halle-Wittenberg, Halle (Saale), Germany) L Lena Schulte-Kemna (18Division of Nephrology, University Hospital Ulm, Ulm, Germany) J Johannes Thaler (19Division of Hematology and Hemostasis, Department of Medicine 1, Medical University of Vienna, Vienna, Austria) K Kathrin Eller (20Division of Nephrology, Department of Internal Medicine, Medical University of Graz, Graz, Austria) J Johannes Ruhe (21Department of Internal Medicine III, Nephrology, University Hospital Jena, Jena, Germany) W Wolfram J. Jabs (22Department of Nephrology, Vivantes Klinikum im Friedrichshain, Berlin, Germany) S Saban Elitok (23Department of Nephrology and Endocrinology, Ernst von Bergmann Hospital Potsdam, Potsdam, Germany) C Christina Hart (24Department of Hematology and Oncology, University Hospital Regensburg, Regensburg, Germany) F Felix Eisinger (25Department of Diabetology, Endocrinology, and Nephrology, University of Tübingen, Tübingen, Germany) M Martin Nitschke (26Division of Nephrology, Department of Internal Medicine, University Medical Center Schleswig-Holstein, Lübeck, Germany) L Lars Grasshoff (26Division of Nephrology, Department of Internal Medicine, University Medical Center Schleswig-Holstein, Lübeck, Germany) W Wolfgang Miesbach (University Hospital Frankfurt, Frankfurt, Germany) F Fedai Özcan (28Department of Nephrology, Klinikum Dortmund, Universität Witten Herdecke, Dortmund, Germany) D Dennis A. Eichenauer (29Department I of Internal Medicine, Center for Integrated Oncology Aachen Bonn Cologne Dusseldorf, University of Cologne, Cologne, Germany) J Jan Menne (30Department of Nephrology, Klinikum Region Hannover, Hannover, Germany) P Paul Knöbl (19Division of Hematology and Hemostasis, Department of Medicine 1, Medical University of Vienna, Vienna, Austria) L Linus A. Völker (1Department II of Internal Medicine and Center for Molecular Medicine Cologne, Faculty of Medicine and University Hospital Cologne, University of Cologne, Cologne, Germany) P Paul T. Brinkkoetter (1Department II of Internal Medicine and Center for Molecular Medicine Cologne, Faculty of Medicine and University Hospital Cologne, University of Cologne, Cologne, Germany)

Abstract

Abstract Immune thrombotic thrombocytopenic purpura (iTTP) is a rare, life-threatening condition. Caplacizumab substantially shortens the time to clinical response, yet delayed platelet count recovery is occasionally observed, raising concerns about iTTP refractoriness. This retrospective multicenter study analyzed 204 acute iTTP episodes reported to the German REACT (Retrospective Evaluation of Acquired Thrombotic Thrombocytopenic Purpura in Caplacizumab-Treated Patients) 2020 and ATMAR (Austrian Thrombotic Microangiopathy Registry) registries, all treated with caplacizumab. Refractoriness was assessed using the 2017 International Working Group criteria and the more stringent definition by the French Reference Center for Thrombotic Microangiopathies. We evaluated time to platelet recovery and presence of confounding clinical conditions, potentially accounting for persistent thrombocytopenia, in all episodes. By day 5 after caplacizumab initiation, 171 of 204 patients (83.8%) achieved a clinical response, and the remaining 33 of 204 (16.2%) showed at least a doubling of the platelet count. Only 3 patients (1.5%) met laboratory criteria for refractoriness. In all cases, plausible alternative causes were present (eg, missed doses, infection). No patient was refractory without a confounding factor. In 8 of 204 patients (3.9%) we observed a markedly prolonged thrombocytopenia (≥10 days) and identified confounding conditions in all cases. In the stratified Cox model, the presence of alternative causes of thrombocytopenia was the only independent determinant of delayed platelet count normalization (hazard ratio, 0.16; 95% confidence interval, 0.09-0.28; P< .001). In the context of caplacizumab-based therapy, true refractoriness is rare. Delayed platelet count recovery is predominantly attributable to concomitant clinical conditions. Careful clinical assessment and context-sensitive interpretation of treatment response before escalating iTTP-specific therapy may avoid unnecessary treatment intensification and associated risks.

Article Details

Journal Blood
Volume / Issue Vol. 147, Issue 21
Published May 21, 2026
Pages 2463-2471
ISSN 0006-4971
Publisher Elsevier BV

Journal Info

Blood

Elsevier BV

ISSN: 0006-4971 Health Sciences

Authors (39)

L

Lucas Kühne

1Department II of Internal Medicine and Center for Molecular Medicine Cologne, Faculty of Medicine and University Hospital Cologne, University of Cologne, Cologne, Germany

T

Thomas Osterholt

1Department II of Internal Medicine and Center for Molecular Medicine Cologne, Faculty of Medicine and University Hospital Cologne, University of Cologne, Cologne, Germany

M

Maximilian Suer

1Department II of Internal Medicine and Center for Molecular Medicine Cologne, Faculty of Medicine and University Hospital Cologne, University of Cologne, Cologne, Germany

S

Sadrija Cukoski

1Department II of Internal Medicine and Center for Molecular Medicine Cologne, Faculty of Medicine and University Hospital Cologne, University of Cologne, Cologne, Germany

R

Ralph Wendt

C

Christian Pfrepper

4Division of Hemostaseology, Department of Hematology, Cellular Therapy, Hemostaseology and Infectiology, University of Leipzig Medical Centre, Leipzig, Germany

S

Sirak Petros

4Division of Hemostaseology, Department of Hematology, Cellular Therapy, Hemostaseology and Infectiology, University of Leipzig Medical Centre, Leipzig, Germany

U

Ulf Schönermarck

5Nephrology Division, Department of Medicine IV, University Hospital LMU Munich, Munich, Germany

A

Anke von Bergwelt-Baildon

5Nephrology Division, Department of Medicine IV, University Hospital LMU Munich, Munich, Germany

J

Jessica Kaufeld

6Department of Nephrology and Hypertension, Hannover Medical School, Hannover, Germany

A

Anja Gäckler

7Department of Nephrology, University Hospital Essen, University of Duisburg-Essen, Essen, Germany

K

Kristina Schönfelder

7Department of Nephrology, University Hospital Essen, University of Duisburg-Essen, Essen, Germany

F

Felix S. Seibert

M

Matthias Masla

9Department of Internal Medicine and Nephrology, Herz-Jesu-Hospital Münster-Hiltrup, Münster-Hiltrup, Germany

J

Jörn Bramstedt

10Medizinische Klinik II Sektion Nephrologie, Klinikum Bremerhaven Reinkenheide, Bremerhaven, Germany

V

Vedat Schwenger

11Department of Nephrology, Klinikum Stuttgart, Stuttgart, Germany

E

Evelyn Seelow

12Department of Nephrology and Intensive Care Medicine, Charité Universitätsmedizin Berlin, Berlin, Germany

A

Anja Mühlfeld

13Division of Nephrology, Department of Medicine, Uniklinik RWTH Aachen, Aachen, Germany

M

Martin Bommer

14Alb-Fils-Klinikum Göppingen, Klinik für Hämatologie, Onkologie, Infektiologie und Palliativmedizin, Göppingen, Germany

T

Tilmann Schmidt

15Section of Nephrology, Clinic and Policlinic of Internal Medicine A, University Medicine Greifswald, Greifswald, Germany

M

Marcus Brand

16General Internal Medicine and Emergency Department, Nephrology, Hypertension and Rheumatology, University Hospital Münster, Münster, Germany

V

Victor Walendy

17Department of Internal Medicine II, Universitätsmedizin (Halle), Medical Faculty of the Martin-Luther-University Halle-Wittenberg, Halle (Saale), Germany

L

Lena Schulte-Kemna

18Division of Nephrology, University Hospital Ulm, Ulm, Germany

J

Johannes Thaler

19Division of Hematology and Hemostasis, Department of Medicine 1, Medical University of Vienna, Vienna, Austria

K

Kathrin Eller

20Division of Nephrology, Department of Internal Medicine, Medical University of Graz, Graz, Austria

J

Johannes Ruhe

21Department of Internal Medicine III, Nephrology, University Hospital Jena, Jena, Germany

W

Wolfram J. Jabs

22Department of Nephrology, Vivantes Klinikum im Friedrichshain, Berlin, Germany

S

Saban Elitok

23Department of Nephrology and Endocrinology, Ernst von Bergmann Hospital Potsdam, Potsdam, Germany

C

Christina Hart

24Department of Hematology and Oncology, University Hospital Regensburg, Regensburg, Germany

F

Felix Eisinger

25Department of Diabetology, Endocrinology, and Nephrology, University of Tübingen, Tübingen, Germany

M

Martin Nitschke

26Division of Nephrology, Department of Internal Medicine, University Medical Center Schleswig-Holstein, Lübeck, Germany

L

Lars Grasshoff

26Division of Nephrology, Department of Internal Medicine, University Medical Center Schleswig-Holstein, Lübeck, Germany

W

Wolfgang Miesbach

University Hospital Frankfurt, Frankfurt, Germany

F

Fedai Özcan

28Department of Nephrology, Klinikum Dortmund, Universität Witten Herdecke, Dortmund, Germany

D

Dennis A. Eichenauer

29Department I of Internal Medicine, Center for Integrated Oncology Aachen Bonn Cologne Dusseldorf, University of Cologne, Cologne, Germany

J

Jan Menne

30Department of Nephrology, Klinikum Region Hannover, Hannover, Germany

P

Paul Knöbl

19Division of Hematology and Hemostasis, Department of Medicine 1, Medical University of Vienna, Vienna, Austria

L

Linus A. Völker

1Department II of Internal Medicine and Center for Molecular Medicine Cologne, Faculty of Medicine and University Hospital Cologne, University of Cologne, Cologne, Germany

P

Paul T. Brinkkoetter

1Department II of Internal Medicine and Center for Molecular Medicine Cologne, Faculty of Medicine and University Hospital Cologne, University of Cologne, Cologne, Germany