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. 2025 Apr;62(2):76-84.
doi: 10.1053/j.seminhematol.2025.04.006. Epub 2025 May 2.

Report of Consensus Panel 1 from the 12th International Workshop on the management of patients with IgM and Waldenstrom's Macroglobulinemia related neuropathy

Shirley D'Sa  1 , Jahanzaib Khwaja  2 , Signy Chow  3 , Meletios A Dimopoulos  4 , Irene Dogliotti  5 , Moshe E Gatt  6 , Roman Hajek  7 , Jindriska Lindsay  8 , Giampaolo Merlini  9 , Pierre Morel  10 , Alessandra Tedeschi  11 , Claudio Cerchione  12 , Merav Leiba  13 , Christopher J Patterson  14 , Steven P Treon  14 , Christian Buske  15 , Jeffrey V Matous  16 , Marzia Varettoni  17 , Josephine M I Vos  18 , Filip Eftimov  19 , Michael P Lunn  20 , Efstathios Kastritis  4
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Report of Consensus Panel 1 from the 12th International Workshop on the management of patients with IgM and Waldenstrom's Macroglobulinemia related neuropathy

Shirley D'Sa et al. Semin Hematol. 2025 Apr.

Abstract

The IgM-related peripheral neuropathies (IgM-PN) are a group of chronic disorders characterized by the presence of monoclonal IgM that may be associated with one of several diseases affecting the peripheral nerves. In many cases, there is a monoclonal IgM associated with activity against neural targets, leading to progressive peripheral nerve demyelination. Neurological symptoms in this setting can also result from direct invasion of the peripheral or central nervous system by lymphoplasmacytic cells (neurolymphomatosis and Bing-Neel syndrome respectively) or via other mechanisms (for example AL amyloid deposition or cryoglobulinemic vasculitis). There is an expanding array of treatment options, but high-quality data are sparse. Diagnostic accuracy is important and needs collaboration between hematologists and neuromuscular specialists to determine the sequence and intensity of investigations. Appropriate causal attribution to the IgM disorder is essential to enable the correct therapeutic intervention. The aims of treatment intervention should be clear and realistic. Consistent and clinically meaningful measures are needed to capture treatment success. Despite therapeutic advances, many patients experience persistent disability, highlighting the need for further research.

Keywords: Demyelinating neuropathy; IgM; Myelin associated glycoprotein; Treatment; Waldenstrom’s macroglobulinemia.

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Conflict of interest statement

Declaration of competing interest The authors declare the following financial interests/personal relationships which may be considered as potential competing interests: SD: BeiGene- honoraria, speaker fees, congress expenses; grant funding Sanius Health Ltd; Cellectar- advisory board; Ouro Medicines- advisor; Janssen- honoraria for Preceptorship. MAD: Honoraria from participation in advisory boards and satellite symposia from Amgen, Sanofi, Regeneron, Menarini, Takeda, GSK, BMS, Janssen, BeiGene, Swixx and Astrazeneca. RH: Reports a consultant or advisory relationship with Janssen, Amgen, Celgene, AbbVie, BMS, Novartis, PharmaMar, and Takeda; has received honoraria from Janssen, Amgen, Celgene, BMS, PharmaMar, and Takeda; has received research funding from Janssen, Amgen, Celgene, BMS, Novartis, and Takeda; is member of Advisory Boards: BMS, Takeda, Amgen, Oncopeptides, Sanofi, Janssen, GSK; has received support for attending meetings and/or travel from Amgen, Celgene, Takeda, Janssen. JL: Reports honoraria from Takeda, BMS, Janssen; Conference and travel support; BMS, Amgen, Takeda, BeiGene, Ad Board: Amgen, Pfizer, Janssen, and Bristol Myers Squibb. PM: Honoraria from Janssen, Astra Zenecca and Incyte; consultancy or advisory role for Janssen and Beigene; and travel support from Abbvie. AT: Received honoraria from AbbVie, J&J, Beigene, Lilly, Astrazeneca. SPT: Received research funding and/or consulting fees from Abbvie/Pharmacyclics, Janssen, Beigene, Lilly, BMS, and Ono Pharmaceuticals. CB: Reports consultancy, honoraria, advisory board, and travel expenses from Roche/Genentech, Janssen, BeiGene, Novartis, Pfizer, Incyte, AbbVie, Gilead, Celltrion, MorphoSys, Regeneron, Sobi, and Lilly. JVM: Received consulting fees from Beigene. MV: Received research funding, and/or consulting fees from AbbVie, Astrazeneca, BeiGene, Janssen. JMIV: received honoraria from Amgen, Beigene, BMS, Janssen, and Sanofi, and research funds from AbbVie/Genmab, and BeiGene. FE: Received funding in grants from CSL Behring, Grifols, Terumo BCT, Takeda, Kendion and the GBS/CIDP foundation. He has also received consultation fees (paid to institution) from Takeda, Dianthus, Sanofi and Argenx. MPL: Reports consulting fees and or travel expenses from ad hoc advisory boards to Roche, Annexon, AstraZeneca, Sanofi, UCB, Sanofi, Takeda, Polyneuron and BeiGene. Research funding associated with trials with CSL Behring, Novartis and UCB Pharma, Optic, Perinoms and IMAGiNe. DSMB for Octapharma trial and Investigator led IoC trial. Unrestricted conference expenses have also been received from Beigene and CSL Behring. EK: Honoraria from GSK, Janssen, Pfizer, and Prothena, and research funds from GSK, Janssen, and Pfizer. CC: Advisory board and/or Consultant and/or speaker for Abbvie, AMGEN, Astellas, Beigene, BMS, Curis, Glycomimetics, GSK, Immunogen, Janssen, Jazz, Karyopharm, Menarini - Stemline, Oncopeptides, Pfizer, Sanofi, Servier, Skyline DX, Stemline, Takeda. JK, SC, ID:, MG, GM, CJP, ML: No disclosures to report.

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