Understanding Side Effects of Therapy for Myasthenia Gravis and Their Impact on Daily Life

Overview

Journal BMC Neurol

Publisher Biomed Central

Specialty Neurology

Date 2019 Dec 23

PMID 31864345

Citations 23

Authors

Elizabeth Dansie Bacci

Karin S Coyne

Jiat-Ling Poon

Linda Harris

Audra N Boscoe

Affiliations

Soon will be listed here.

Abstract

Background: Myasthenia gravis is a chronic, autoimmune, neuromuscular junction disorder characterized by skeletal muscle weakness. Current therapies for myasthenia gravis are associated with significant side effects. The objective of this study was to characterize the side effects, and associated health-related quality of life and treatment impacts, of traditional myasthenia gravis treatments.

Methods: This study had two phases; a Phase 1 interview and a 2-part web-based survey in Phase 2 that included brainstorming (Step 1) and rating (Step 2) exercises using group concept mapping. In Phase 1, all 14 participants reported experiencing side effects from myasthenia gravis treatments which had significant impacts on daily life. In Phase 2, 246 participants contributed to Step 1; 158 returned for Step 2.

Results: The brainstorming exercise produced 874 statements about side effects and their impact, which were reduced to 35 side effects and 23 impact-on-daily life statements. When rating these statements on severity, frequency, and tolerability, blood clots, infections/decreased immunity, weight gain, and diarrhea were the least tolerable and most severely rated. The most frequent and severe impacts were sleep interference and reduced physical and social activities.

Conclusions: Based on these findings, there appears to be a need for better and more tolerable treatments for myasthenia gravis patients.

Citing Articles

Serum Inflammatory Factors Levels and Risk of Myasthenia Gravis: A Bidirectional Mendelian Randomization Study.

Jingjing S, Liang H, Tao Y Mol Neurobiol. 2025; .

PMID: 39932515 DOI: 10.1007/s12035-025-04744-5.

Intravenous Efgartigimod Alfa as Initial Monotherapy for Disabling Ocular Myasthenia in an Elderly Patient with Multiple Comorbidities.

Inzirillo K, Carranza O, Swerdloff M Cureus. 2024; 16(11):e74768.

PMID: 39734968 PMC: 11682844. DOI: 10.7759/cureus.74768.

Antigen-specific immune therapy (CNP-106) for treatment of generalised myasthenia gravis: rationale and design of first-in-human randomised controlled trial.

G Brew S, Frey M, P McCarthy D, Elhofy A, Nowak R BMJ Neurol Open. 2024; 6(2):e000836.

PMID: 39720510 PMC: 11667273. DOI: 10.1136/bmjno-2024-000836.

SPOON: an observational, cross-sectional study of perceptions and expectations of adults with generalised myasthenia gravis in France.

Camdessanche J, Sacconi S, Archer A, Boulanger P, Crochard A, Bertocchio J BMJ Open. 2024; 14(12):e088813.

PMID: 39622572 PMC: 11624833. DOI: 10.1136/bmjopen-2024-088813.

Initiation response, maximized therapeutic efficacy, and post-treatment effects of biological targeted therapies in myasthenia gravis: a systematic review and network meta-analysis.

Zhong H, Li Z, Li X, Wu Z, Yan C, Luo S Front Neurol. 2024; 15:1479685.

PMID: 39529623 PMC: 11551044. DOI: 10.3389/fneur.2024.1479685.

References

Burns T, Conaway M, Cutter G, Sanders D . Less is more, or almost as much: a 15-item quality-of-life instrument for myasthenia gravis. Muscle Nerve. 2008; 38(2):957-63. DOI: 10.1002/mus.21053. View

Dunand M, Botez S, Borruat F, Roux-Lombard P, Spertini F, Kuntzer T . Unsatisfactory outcomes in myasthenia gravis: influence by care providers. J Neurol. 2009; 257(3):338-43. DOI: 10.1007/s00415-009-5318-9. View

Burns T, Grouse C, Wolfe G, Conaway M, Sanders D . The MG-QOL15 for following the health-related quality of life of patients with myasthenia gravis. Muscle Nerve. 2010; 43(1):14-8. DOI: 10.1002/mus.21883. View

Paul R, Nash J, Cohen R, Gilchrist J, Goldstein J . Quality of life and well-being of patients with myasthenia gravis. Muscle Nerve. 2001; 24(4):512-6. DOI: 10.1002/mus.1034. View

Krousel-Wood M, Islam T, Webber L, Re R, Morisky D, Muntner P . New medication adherence scale versus pharmacy fill rates in seniors with hypertension. Am J Manag Care. 2009; 15(1):59-66. PMC: 2728593. View

Sjodahl Hammarlund C, Nilsson M, Idvall M, Rosas S, Hagell P . Conceptualizing and prioritizing clinical trial outcomes from the perspectives of people with Parkinson's disease versus health care professionals: a concept mapping study. Qual Life Res. 2014; 23(6):1687-700. DOI: 10.1007/s11136-013-0614-3. View

Palace J, Newsom-Davis J, Lecky B . A randomized double-blind trial of prednisolone alone or with azathioprine in myasthenia gravis. Myasthenia Gravis Study Group. Neurology. 1998; 50(6):1778-83. DOI: 10.1212/wnl.50.6.1778. View

Rosas S, Kane M . Quality and rigor of the concept mapping methodology: a pooled study analysis. Eval Program Plann. 2012; 35(2):236-45. DOI: 10.1016/j.evalprogplan.2011.10.003. View

Juel V, Massey J . Myasthenia gravis. Orphanet J Rare Dis. 2007; 2:44. PMC: 2211463. DOI: 10.1186/1750-1172-2-44. View

10.

Morisky D, DiMatteo M . Improving the measurement of self-reported medication nonadherence: response to authors. J Clin Epidemiol. 2010; 64(3):255-7. PMC: 3109729. DOI: 10.1016/j.jclinepi.2010.09.002. View

11.

Morisky D, Ang A, Krousel-Wood M, Ward H . Predictive validity of a medication adherence measure in an outpatient setting. J Clin Hypertens (Greenwich). 2008; 10(5):348-54. PMC: 2562622. DOI: 10.1111/j.1751-7176.2008.07572.x. View

12.

Sanders D, Evoli A . Immunosuppressive therapies in myasthenia gravis. Autoimmunity. 2010; 43(5-6):428-35. DOI: 10.3109/08916930903518107. View

13.

Gajdos P, Chevret S, Clair B, Tranchant C, Chastang C . Clinical trial of plasma exchange and high-dose intravenous immunoglobulin in myasthenia gravis. Myasthenia Gravis Clinical Study Group. Ann Neurol. 1997; 41(6):789-96. DOI: 10.1002/ana.410410615. View

14.

Boldingh M, Dekker L, Maniaol A, Brunborg C, Lipka A, Niks E . An up-date on health-related quality of life in myasthenia gravis -results from population based cohorts. Health Qual Life Outcomes. 2015; 13:115. PMC: 4522107. DOI: 10.1186/s12955-015-0298-1. View

15.

Burns T, Grouse C, Conaway M, Sanders D . Construct and concurrent validation of the MG-QOL15 in the practice setting. Muscle Nerve. 2009; 41(2):219-26. DOI: 10.1002/mus.21609. View