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In a cross-sectional study of 100 generalised myasthenia gravis (gMG) patients, one-third of gMG patients are unsatisfied with their current state of symptoms1*
Model is not a real patient
The symptoms of gMG are difficult to measure, but in a qualitative, cross-sectional,
non-interventional study, those most frequently reported were:2

For patients with gMG, instability and unpredictability are ever present, and nearly all patients experience symptom fluctuations severe enough to influence their daily life2–6†

LEARN MORE ABOUT IDENTIFYING UNCONTROLLED gMG
Many gMG patients feel that their treatment adds to their overall burden7

The systemic side effects of long-term corticosteroid therapy are numerous and can be highly impactful8

Intravenous immunoglobulin (IVIg) treatment has been a mainstay of myasthenia gravis (MG) treatment for decades, but limitations remain, such as time-intensive, shortages can occur, slow therapeutic onset and inadequate symptom control9–12

Around 80% of patients do not achieve stable remission, and 10% are intolerant to current treatments such as acetylcholinesterase inhibitors (AChEIs), immunosuppressive agents and thymectomy13

Patients fear experiencing a myasthenic crisis; for 15–20%, this fear becomes a reality7,14

The unmet need for targeted immunomodulatory drugs for the treatment of MG has resulted in an ongoing campaign to develop safer and more effective treatments10

Many people with gMG experience unrelenting instability and unpredictability4-6

Although some triggers of intermittent worsening of symptoms have been identified, they are not well understood and are often beyond a patient’s control3,6,15

Triggers include:6,15

Mental or
physical stress

Changes in the weather

Infections

Certain drugs

Vaccinations

Multiple studies have found that people with gMG are in a constant state of adaptation to cope with fluctuating and unpredictable muscle weakness4–7

Early control of the fluctuating symptoms of gMG may improve long-term outcomes16-18

Achievement of minimal manifestation status within the first 12–24 months of treatment initiation is associated with improved long-term outcomes, more sustained control of symptoms, and reduced risk of exacerbations and myasthenic crises16-18

Patients who still experience symptoms 24 months after disease onset despite immunosuppressive therapy are less likely to achieve disease control without modification of therapy16

LEARN MORE ABOUT IDENTIFYING UNCONTROLLED gMG

Law et al, 2021. The lived experience of myasthenia gravis: a patient-led analysis

Led by a Patient Council of nine individuals living with MG, this analysis reviewed insights from multiple data sources with the objective of generating a series of statements that best represent the lived experience of gMG7

READ THE PAPER
Contact UCBCares for further information on gMG
AChEI, acetylcholinesterase inhibitor; EQ-5D-5L, European Quality of Life 5 Dimensions 5 Level Version; gMG, generalised myasthenia gravis; IVIg, intravenous immunoglobulin; MG, myasthenia gravis; PASS, Patient Acceptable Symptom State.
*In this cross-sectional study, patients with gMG followed at the Copenhagen Neuromuscular Center from October 2019 to June 2020 participated in one test. The patients completed commonly used MG-specific outcome measures and generic questionnaires for depression (Major Depression lnventory), comorbidities (Charlson Comorbidity Index), fatigue (Multidimensional Fatigue Inventory), overall health state – European Quality of Life 5 Dimensions 5 Level Version (EQ-5D-5L) and satisfaction with MG treatment. The analyses were anchored in the Patient Acceptable Symptom State (PASS). 190 patients were screened for the study, of which 100 were included. One-third of the patients reported dissatisfaction (negative PASS status) with their current symptom state.1
†Semi-structured, in-depth concept elicitation interviews of 28 patients diagnosed with gMG in the United States. 96% of patients experienced symptom fluctuations severe enough to impact daily life. 2

References

1. Andersen LK, Jakobsson AS, Revsbech KL, et al. Causes of symptom dissatisfaction in patients with generalized myasthenia gravis. J Neurol. 2022;269(6):3086–93.
2.Jackson K, Parthan A, Lauher-Charest M, et al. Understanding the symptom burden and impact of myasthenia gravis from the patient’s perspective: a qualitative study. Neurol Ther. 2023;12(1):107–28.
3.Juel VC, Massey JM. Myasthenia gravis. Orphanet J Rare Dis. 2007;2:44.
4.Cutter G, Xin H, Aban I, et al. Cross-sectional analysis of the Myasthenia Gravis Patient Registry: disability and treatment. Muscle Nerve. 2019;60(6):707–15.
5.Xin H, Harris LA, Aban IB, et al. Examining the impact of refractory myasthenia gravis on healthcare resource utilization in the United States: analysis of a Myasthenia Gravis Foundation of America Patient Registry sample. J Clin Neurol. 2019;15(3):376–85.
6.Grob D, Brunner N, Namba T, et al. Lifetime course of myasthenia gravis. Muscle Nerve. 2008;37(2):141–9.
7.Law N, Davio K, Blunck M, et al. The lived experience of myasthenia gravis: a patient-led analysis. Neurol Ther. 2021;10(2):1103–25.
8.Farmakidis C, Pasnoor M, Dimachkie MM, et al. Treatment of myasthenia gravis. Neurol Clin. 2018;36(2):311–37.
9.Intravenous immune globulin (IVIg) (Beyond the Basics). UpToDate. https://www.uptodate.com/contents/intravenous-immune-globulin-ivig-beyond-the-basics. Last accessed August 2024.
10.Alhaidar MK, Abumurad S, Soliven B, et al. Current treatment of myasthenia gravis. J Clin Med. 2022;11(6):1597.
11. Gilhus NE. Myasthenia gravis. N Engl J Med. 2016;375(26):2570–81.
12.Solís-Díez G, Turu-Pedrola M, Roig-Izquierdo M, et al. Dealing with immunoglobulin shortages: a rationalization plan from evidence-based and data collection. Front Public Health. 2022;10:893770.
13. Mantegazza R, Antozzi C. When myasthenia gravis is deemed refractory: clinical signposts and treatment strategies. Ther Adv Neurol Disord. 2018;11:1756285617749134.
14. Wendell LC, Levine JM. Myasthenic crisis. Neurohospitalist. 2011;1(1):16–22.
15. Blum S, Lee D, Gillis D, et al. Clinical features and impact of myasthenia gravis disease in Australian patients. J Clin Neurosci. 2015;22(7):1164–9.
16. Tomschik M, Hilger E, Rath J, et al. Subgroup stratification and outcome in recently diagnosed generalized myasthenia gravis. Neurology. 2020;95(10):e1426–36.
17. Nelke C, Stascheit F, Eckert C, et al. Independent risk factors for myasthenic crisis and disease exacerbation in a retrospective cohort of myasthenia gravis patients. J Neuroinflammation. 2022;19(1):89.
18. Chen D, Peng Y, Li Z, et al. Prognostic analysis of thymoma-associated myasthenia gravis (MG) in Chinese patients and its implication of MG management: experiences from a tertiary hospital. Neuropsychiatr Dis Treat. 2020;16:959–67.