4.1
Myasthenia gravis is an autoimmune condition that can affect multiple muscle groups, and causes muscle weakness and fatigue. At first, it usually only affects the eye muscles. But, in around 80% of people, it will affect other muscle groups and become generalised myasthenia gravis (gMG). Most people with gMG have anti-acetylcholine receptor (anti-AChR) antibodies. The patient experts explained the condition can have substantial physical, emotional and financial impacts on the person with gMG, as well as their family. They noted that the typical symptoms of fatigue, and problems with breathing, speaking, seeing and concentrating, substantially impact daily activities and ability to work. The symptoms of gMG mean that many people regularly need a high level of care. All current treatments for gMG aim to suppress the condition to reduce symptoms and there is no cure. The patient experts noted that treatments for gMG are associated with side effects, and it is particularly difficult to manage the side effects of multiple treatments simultaneously. Many people with gMG take corticosteroids, but it can be difficult to optimise the lowest effective dose (to minimise side effects) without increasing the risk of exacerbations (an acute worsening of symptoms) or myasthenic crisis. People with gMG and their carers spend their lives fearing a myasthenic crisis, a life-threatening complication of gMG in which the muscles that control breathing are affected and hospitalisation is required. The patient experts explained that there are limited options available for people whose condition does not improve with standard treatment (refractory gMG). Typically, people with refractory gMG will have intravenous immunoglobulin (IVIg) or plasma exchange (PLEX), or try a different type of immunosuppressant. IVIg and PLEX both require regular hospital visits or stays. These can be difficult to fit around work and family commitments, and place substantial burden on carers. The patient experts highlighted the unmet need for treatments for refractory gMG. The committee concluded that gMG is a debilitating condition with a high treatment burden.
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