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Stopping Psoriatic Arthritis Biologic Medication Mistake Deanna Kizis

About a week before most of the U.S. started entering into widespread social isolation, my pulmonologist told me that if I got infected with the coronavirus I might not die.

“Wait, are you joking?” I said, sitting in his office while he listened to my lungs for what I thought would be a routine exam.

“No,” he said. “This is going to be bad. Really bad.”

I was instantly freaked out. Did he say die? Like, I could die die? Before I continue, let me say I adore my pulmonologist. He’s the one who usually walks me off the ledge, not puts me on it.

I trusted him on what medications to take when my asthma got so bad during my pregnancy that it threatened my unborn baby’s life. So when he told me that day to fill all my prescriptions at the un-crowded mom-and-pop pharmacy across the street and to go home, close the door, and not leave for an untold number of days, I did it.

The second I got home from that appointment I called my rheumatologist. I wanted to hear what she had to say about taking biologics for psoriatic arthritis in the middle of a pandemic. She, too, is a fantastic doctor. She is the one who diagnosed me with psoriatic arthritis after years of various doctors trying to figure out why I was so stiff and in pain that most days I would walk peg-legged like a B-movie Frankenstein.

“The CDC is advising that autoimmune patients like you do not stop taking your medication,” she said, “so just keep going. We don’t have more information yet.”

“Uh, that’s scary,” I said. Thinking what we all know: But my medication lowers my immune system. Couldn’t it make me more susceptible to coronavirus?

She said that most of her patients were calling, frightened and worried. However, going off my medication, she explained, could cause an arthritis flare that would be hard to control. It would also dysregulate my immune system, she said, which is not something you want while a novel virus is wreaking havoc on the world.

My First Mistake

I did what any rational human being would do: I said thank you, hung up the phone, shoved my biologic injections to the back of my refrigerator, and avoided them like they were the plague.

I figured the pain wouldn’t going to be that bad. I told myself I could handle it. After all, a little bit of discomfort is nothing I can’t handle if it means some peace of mind.

Denial, as they say, is not just a river in Egypt.

At first, it wasn’t bad at all. I felt fine a week later. In fact, I felt great. What if I’ve actually beaten this thing? I thought as I took stock of how many bags of beans and rice I had in my cabinets. Maybe I could be in complete remission?!

The second week got more, um, interesting. My jaw, which is a favorite spot for my PsA, started to feel sore and was making a clicking sound. My right knee was swollen after a dog walk. My left shoulder was achy. And why were the bottoms of my feet sore? That was a new one.

Refusing to be alarmed, I upped the Advil and the turmeric supplements as I tried to learn how to bake bread with a sourdough starter.

My Pain Took a Turn for the Worse

On week three, though, reality came crashing in. My shoulders and neck were so inflamed that my nerves seemed to wrap themselves around my head and squeeze my brain like a trash compactor. The headaches that resulted were insane. My jaw was making a peppermill grinding sound every time I opened and closed it.

When I tried to eat a Kind Bar — the chocolate and sea salt ones are my favorite snack — biting into it felt like it was going shatter my face. My knee was a baseball; my fingers were cocktail sausages. (And some people are bummed they can’t get a manicure right now. Sigh.)

The bottoms of my feet were ablaze. I was that B-movie Zombie once again — not only because of the pain, but because I was so fatigued I could barely keep my eyes open, which meant less playtime with my wonderful 7-year-old. This was not acceptable.

In other words, this flare was an official reminder that my psoriatic arthritis is not something to trifle with. It is not an inconvenience I can handle, and it is not something I can treat myself with Indian spices. It’s a medical condition that I have to be vigilant about, even during COVID-19 (and beyond).

Eating Crow — and Calling My Rheumatologist

My cheeks were burning with embarrassment when I called my rheumatologist back. I told her I was sorry. I didn’t take her advice, I stopped my biologic, and now I was in the worst flare of my life. I was steeling myself for a lecture when I was reminded why this is a woman I usually listen to.

She told me that this was a crazy time, and that I wasn’t the only person in the world who attempted this. She said not to worry; we would get this flare back under control. Her compassion almost brought me to tears.

Upon her advice, I doubled my injections to twice a week. (Have you noticed how I tried to handle things myself and now I take even more medication than I did before? Oh, the irony.) We upped the ibuprophen to 800 milligrams three times a day. I started using Epsom salt baths and ice packs, because that seemed like a good idea, too. She said to check back in a couple of weeks and let her know how it was going.

A Lesson Learned the Hard Way

Two weeks later, I’m better, but I’m not back to where I was before this started. This flare is a stubborn one. Different body parts swell up at will. I’m still tired, but am alert enough that I can garden with my daughter and play a mean game of Apples to Apples. I don’t have peppermill jaw anymore, and I can walk the dog.

To be honest, I’m annoyed with myself — because I did this to myself. Going off my medication felt like something I could do to protect myself in a world that seemed like it was going off the rails.

Turns out I was wrong.

At least I know what not to do the next time a global pandemic threatens to upend life as we know it.

When I feel particularly bad, I remind myself that my doctor said not to beat myself up about going off my medication, and that I’m not the only one who tried this. This makes me feel a bit better.

I try to remember that taking care of myself — when it comes to my psoriatic arthritis — is best done not with fear, but hope (and Kind Bars, when I can).

A Note from CreakyJoints

While it is natural to have concerns about taking medications that can affect the immune system, you should not stop taking any medications or adjust your dose of any medications without first talking to your doctor.

In general, if you don’t have a COVID-19 infection and are stable on your regimen, the American College of Rheumatology (ACR) recommends that you stick with the current medications you use to treat your inflammatory arthritis or related conditions. One exception: The guidance suggests that patients on corticosteroids should take the lowest possible dose to manage symptoms.

Read more here about managing rheumatologic medications during the COVID-19 pandemic.

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