Catching the Flu When Immunocompromised

In my work as a violin teacher, I come into contact with dozens of students each day. Unfortunately, this also means that I’m exposed to dozens of students’ germs each day. My students understand that I’m immunocompromised and always let me know if they’re sick so that I can reschedule their lesson. However, the spread of germs is difficult to predict or control. This past month, I became sick with the flu for the first time since before the pandemic.

Signs of the flu

I take over 90 pills a week to keep my lupus under control. Over half of these are immunosuppressants. Minor illnesses like colds or the flu that make a regular person sick for days can make immunocompromised people like me severely ill for weeks.

The first sign that I was sick was sinus congestion. I lost my voice and had a runny nose. By the third day, I was running a high fever. At night, chills and night sweats kept me awake. The fever lasted for five days. As I got sicker, the usual lupus fatigue that I live with each day increased to an almost unbearable level.

I called in sick to work and rescheduled as many students as I could. Simple tasks like walking to the bathroom or kitchen felt like wading through cement. I stayed in bed until 5:30pm or later, at which point I would move to the couch if I felt well enough. Because I was barely able to make it to the kitchen most days, I kept bananas and pears in bed with me to eat when I was hungry.

Immunosuppressants

During my first year on immunosuppressants, I hadn’t yet learned to stop my medications while I was sick, which resulted in such a severe case of the flu that I almost ended up in the hospital. My rheumatologist had advised me after that to temporarily stop taking my immunosuppressants while I had a cold or flu. Even without my immunosuppressants, my body could barely fight off the flu. I struggled with extreme fatigue for nearly two full weeks. Then I stopped being able to sleep.

Insomnia is often the first sign that I’m headed into a lupus flare. Not being able to take my immunosuppressants for over a week had triggered my lupus. Before I could fully recover from the flu, I had to restart my immunosuppressants. Unfortunately, that wasn’t enough to keep my disease under control.

In addition to severe fatigue, I started feeling nauseous and dizzy most of the time. On the day I tried to return to teaching, I became so nauseous I had to leave and go home.

Bringing in steroids

To get the lupus flare under control, I started on a course of steroids. While steroids are often necessary during a lupus flare, they also have side effects. One of those side effects is extreme hunger. Even though my family had dropped off pre-made meals at my house, I was so exhausted that it was still difficult to make it to the kitchen every few hours to eat.

Nearly three weeks after catching the flu, I’m beginning to taper off the steroids. The dizziness and nausea is less severe but still an issue, so I won’t be driving for a while. Despite getting my flu vaccine earlier this year, catching the flu will take me at least a full month to recover from.

At the beginning of the COVID-19 pandemic, we all became experts on how to stop the spread of germs seemingly overnight. Masks became the norm. Sick people quarantined at home so as not to infect their friends, coworkers, and family. As the pandemic subsides and the world tentatively returns to normal, I hope we can retain both the knowledge and the desire to protect the most vulnerable members of our society.

Catching the flu while immunocompromised is no joke.