COVID continues to be a concern if you are immunocompromised or have a weakened immune system because of a medical condition or a treatment for a condition. This is the case if you have myasthenia gravis, and are taking immuno-suppressant medication. The Centers for Disease Control continues to recommenf that those who are immunocompromised or have a weakened immune system because of a medical condition or a treatment for a condition keep their vaccinations up to date.
In late 2022, Linda Loland and Victor Yipp both experienced worsening MG breathing and swallowing symptoms when they contracted COVID. Here are their stories.
Linda’s Story
By Linda Loland
I was sure I had managed to dodge the Covid bullet. For more than 2 years I had followed all protocols, but I finally caught it right at home from family members.
My COVID started out as a mild cold but within 24 hours I could feel some upper respiratory congestion. Since my MG crisis 6 years ago which landed me on a ventilator for a week, my lungs are the first thing to act up. My doctor advised me to go to the ER and they saw my oxygen level was running low. Along with other risk factors they decided to send me to Glenbrook Hospital where they have a quarantine ward. I received three days of Remdesivir infusions which greatly helped with the congestion. I felt fine after 5 days but found one eyelid was drooping more and more. I thought it may be residual affects from COVID since I haven’t had any major MG symptoms in four years.
I was also now due for my monthly IVIG but knew I would not be able to go to the infusion clinic since I had to quarantine at home for another week. Since I had active MG symptoms again, I didn’t want to postpone my appointment. I asked if I could receive IVIG there but was told this was strictly a COVID ward.
This is when we have to strongly be our own advocates! After unsuccessfully trying to make my case on how quickly this could get worse – usually gagging on food is one of my first symptoms- I had to call in the “big guns” and text my neurologist for help. He once worked at this hospital and he texted me back that I indeed should receive it. I showed the hospitalist the message and I received IVIG the next morning.
For three months, the eye drooping stayed pretty consistent along with some facial weakness and leg fatigue now. Even with increased prednisone it was not getting better. I met with my neurologist and he felt that the newly approved Vyvgart may work for me.
A few weeks ago I finished the cycle of infusions. It was a one-hour infusion once a week for four weeks. Right now, my symptoms are much better. In about six weeks I’ll meet with my doctor and see if things are still good or if I might need further Vyvgart infusions going forward.
Here are my thoughts on the whole situation. As immuno-compromised as we are, we can make full recovery from whatever life throws our way. Keep a positive attitude and remember that we are MG Strong!
Victor’s Story
By Victor Yipp
There’s no cure for Myasthenia Gravis. If you are fortunate, you may be able to achieve a condition of remission. Until you’re not.
I was diagnosed with the anti-Musk version of MG in November 2017. With the assistance of my neurologists and some specialized medication, I was able to achieve remission from this rare disease (except for fatigue–I need to take an hour nap daily, which is not too much of a sacrifice 😊) until a few months ago. NOTE: While I mention specific medications used for treatment of my version of MG, these are not recommendations for anyone else. You should discuss with your health care provider what treatments are appropriate for your specific MG diagnosis.
What happened to me seemed like the perfect storm. It all began in Canada, in March 2022. On a ski trip. I caught COVID, fortunately near the end of our trip. Minor symptoms emerged, just a low fever, congestion, and some additional fatigue. But soon enough, long haul COVID set in. I encountered shortness of breath and wheezing. I had to sleep sitting up in order to minimize chest congestion. Then came a mild pneumonia, with an x-ray and antibiotics prescribed by my PCP. Finally, the perfect ending: a relapse of my MG, revealing itself through increasing difficulty in swallowing.
I went to the same hospital where I was at with my original diagnosis, but this time for only eight days instead of my 32-day stay in 2017. Fortunately, my neurologists knew the drill for me. I started on a course of plasmapheresis, five treatments in all. My swallowing ability increased dramatically. After a few days and with speech therapy, I was able to get back to near normal in swallowing—which I was very appreciative of since I was not too fond of the pureed diet I was put on with my original diagnosis. I was put on low dosage prednisone and sent home.
A month later I started on a course of Truxima, a biosimilar to the drug Rituximab, which I had taken in 2017 to put me on the road to remission. I received four IV infusions in as many weeks and will receive another two courses this year. Now I feel much more energized, exercising almost as much as I did before I was originally diagnosed with MG. I am tapering off the prednisone and hope to officially be back in remission soon!
