A Flare, an Exacerbation, or a Crisis
Last updated: June 2023
When I was first diagnosed with myasthenia gravis (MG), I didn’t know there were levels to symptom severity. I just knew that I didn’t feel well. It took several months to understand how doctors classify how bad our symptoms are, and whether or not emergency care is needed.
To start, a flare is the least severe of the options. People with MG tend to have periods of flares and then periods of feeling symptoms ease or lessening quite often, even if we are managed really well with medication.1
A flare can be mild or it can be brutal. Just because it isn’t considered as serious as a crisis doesn’t mean it isn’t awful. Although symptoms can be pretty severe, emergency care may not be required.
Now, a flare can lead to more serious symptoms if we don’t get a handle on it. During flares we need lots of rest and possibly even a change in medication. All sorts of things can cause flares including heat, fatigue, stress, and illness. Flares can be fleeting or they can last weeks or even months.1
"MG flare" or "exacerbation" are sometimes used interchangeably. For me, when my symptoms are more severe and begin to affect my swallowing or breathing, I refer to it as an exacerbation. My Breathing wouldn’t require intubation at this point; it might just be more challenging to get a satisfying breath and I might notice shortness of breath more on exertion.
My swallowing also wouldn’t quite cause choking. It would be what my doctor calls a conscious awareness of your swallowing since it’s typically something we do without thinking. I'm more aware and have to take smaller bites, eat less food, or try a different consistency of food for example.
In addition to swallowing or respiratory weakness, I may have extremity weakness, double vision or a droopy eye lid too. For me, exacerbations can be the precursors to an MG crisis. Also, more often times than not, my exacerbations require a more aggressive treatment plan like IVIG, plasmapheresis, or an addition/increase of immunosuppressants.
A myasthenic crisis is the scariest of all options. All of us with the disease want to avoid a crisis at all costs, however 1 in 5 will experience one throughout the course of their disease.2
An MG crisis occurs when your breathing muscles become so weak that medical intervention is needed. These are life threatening and require emergency treatment including intubation/being on a ventilator. A crisis can start with a flare that turns into worsening symptoms but occasionally (and less likely) it can happen unexpectedly.1,2
A crisis may occur after physical trauma such as surgery or exposure to a medication that is contraindicative of MG for example. While intubated, more aggressive medical options are also introduced or increased such as the ones above: IVIG and plasmapheresis being the most common. These are used to help get you off the ventilator as quickly as possible.1,2
These 3 classifications can help you communicate with your doctor when symptoms start to appear or progress. It will help both of you figure out your baseline which will then help determine a more effective treatment plan depending on how severe your symptoms are.
My most frustrating MG symptom is _____.