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The Unavoidable Challenges of Being Immunocompromised

When I was finally diagnosed with rheumatoid arthritis, I was already living with Crohn's disease, another autoimmune disease that affects the gastrointestinal tract. Because of this, I was actually already on a biologic for that disease — one called Entyvio. Unfortunately, Entyvio was gut-specific, making it ideal to try to manage my Crohn's disease but unable to help with my rheumatoid arthritis.

After a brief stint of trying and failing Humira, I was placed on Remicade.

Remicade changed my life.

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My biologic gets a little help

For the last 6 years, Remicade has managed both of my autoimmune diseases fairly well. I receive an IV infusion once every 5 weeks, and for most of the time in between doses, I find that my quality of life is much stronger than it was previously. Now, to be truthful, Remicade gets a little help, a supportive boost from a medication called Azathioprine — a medication that comes in pill form that I take daily.

These 2 medications together have improved my joint pain, along with the swelling and stiffness I used to experience. That doesn't mean those things never happen, but they happen much less and much less severely than they once did.

For this, I am forever grateful. Full stop. I wouldn't (I won't) change anything about this regimen unless I have to.

The downside of taking immunosuppressive medications

The massive downside, especially given the status of the world over the last 3 years? Both Remicade and Azathioprine significantly suppress my immune system. This means that I am much more susceptible to any germs I come in contact with.

The nondescript bonus here? My daughter is 4 and in preschool. Preschool, which is a breeding ground for ALL OF THE GERMS — with kids who were all born shortly before the pandemic began and have not previously had the opportunity to build up their own immune systems yet.

Hospitalization for pneumonia

My daughter wears a mask to school (most of her classmates do not) and practices great hand washing, but neither of those things are a perfect shield. So, this year, every single virus she's brought home from school, I've gotten, too.

The problem is, I've gotten it more severely and taken much longer to recover every single time.

Most recently, I was hospitalized for pneumonia. The virus from preschool was human metapneumovirus, and my daughter had fevers for 3 days — which were well managed with Tylenol — along with a small cough that lasted a few more days. I started fevering about 48 hours after my daughter, but because I am immunocompromised and also have asthma, the virus turned into pneumonia for me. It caused significant reduction in my SpO2 (oxygen saturation), requiring me to be on oxygen and also receive IV antibiotics over the course of 5 days.

During this hospitalization, every physician that walked into my room literally said, "Oh, you must have a cute little one at home." AKA, this is the virus flavor of the month in daycares and preschools; obviously, that's where you got it from.

Being immunocompromised and the parent of a young child

I can't avoid my daughter when she's sick. In fact, she wants and needs me more than ever during those times.

And yet, I know that by taking care of her, I am directly increasing my exposure to whatever she's fighting off, and now, I've become hypervigilant about monitoring my own body and symptoms in the days after each of these incidences.

It is exhausting and scary being immunocompromised in a world not just where COVID is still out there, but where things like rhinovirus, RSV, and the flu feel increasingly daunting knowing that my body cannot do much to fight off infections.

If I have to choose, I'm choosing immunosuppression

During my pneumonia hospitalization, I had a general physician ask if it would be possible for me to reduce the doses of my immunosuppressive medication, to receive them less frequently, or to come off of them.

My answer was a flat-out no.

Unfortunately, I know the intense evils of what unchecked rheumatoid arthritis feels like, and if I have to choose, I'm choosing immunosuppression over that.

What a frustrating choice to have to make.

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