When Your Treatments Make You Sick: A Personal Experience

What happens when the immunosuppressants intended to keep psoriatic arthritis (PsA) under control lower your defenses? Here’s how I navigated my recent experience with neutropenia.

We rely upon our medication to keep us well, and as part of a healthy lifestyle, our treatments play a vital role in managing our conditions, allowing us to lead a better quality of life. But what happens when the treatments designed to make us better make us sick?

I recently experienced neutropenia, which occurs when a low level of neutrophils in the blood increases vulnerability to infections. Immunosuppressants intended to keep my PsA under control lowered my defenses too well, and this experience affected me both physically and emotionally.

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A history of infections

Almost anyone with PsA who has been on immunosuppressant treatment can relate to the “greater good” path we walk. We repeatedly remind our loved ones, friends, employers, and almost just as often, ourselves, that the treatments we take for our PsA are a better alternative to the relentless wilderness of unmanaged psoriatic disease.

I have lost count of the times somebody has asked me, “Why do you take that stuff if it makes you sick?” as another infection comes along, causing me to miss work or, worse, tell my son that I am unable to make our plans a reality.

I became so used to the constant cycle of picking up ear, nose, and throat infections (especially with a toddler who attends nursery school living in the house) that I was slow to notice a dangerous emerging escalation as I entered the start of 2023.

When a cold is not just a cold

Throughout the fall of 2022 and winter, I struggled with a constant returning chest infection. Being on biologics and sulfasalazine for many years and being an asthmatic, this wasn’t unusual — particularly in the winter months here in the United Kingdom, as kids are forced to spend more time indoors bundled into stuffy, crowded day care rooms.

However, this particular infection would not leave. As soon as a course of antibiotics finished, within 2 weeks, I was vomiting and dizzy from fever again. This was a symptom that, up until this point, I had associated with a simple chest infection.

To make matters worse, by New Year’s Day of 2023, when I was on yet another course of antibiotics and steroids for the infection’s impact on my asthma, I developed COVID for the second time. I was miserably ill and more fatigued than I had ever felt.

By March, after another bout of sickness, described only as “something viral,” I was again back in the doctor’s office.

A shock to the system

By this point, I knew something wasn’t right. I wasn’t just sick — I was really sick. On top of the coughing and bloody mucus that I was bringing up every day, I was sensitive to light and sporting bright red bloodshot eyes. My complexion was waxy, and my mouth was full of ulcers. I was angry at myself for not spotting it earlier. With asthma, COVID, and a regularly germ-ridden toddler in the house, I ultimately failed to connect the dots. My wife was the driving force behind demanding answers.

So often, our caregivers see things we can’t through the fatigue, suffering, and haze of worry.

I thought I was just “unlucky” until I realized I hadn’t had a blood test in almost 6 months, something that should happen every 3 months as a minimum. Given the current strain on the United Kingdom’s National Health Service post-pandemic, this routine part of my care easily slipped through the net in times of crisis and year-long waiting lists.

My primary care doctor took one look at me, and before I could even give the usual pre-warning of “I’m on biologics, so my fever will be masked,” she was throwing the kitchen sink at me. She immediately drew my blood and gave me a plan for how I would get my results before the weekend, even though she would be on holiday.

The next day, her colleague called with the news: “Your bloodwork is concerning. You’re neutropenic. You have little in the way of defenses and are at a high risk of getting things like pneumonia, sepsis, and fungal infections. Isolate and call the hospital immediately for the next steps, but I suggest stopping all your medication.”

I was in complete shock. All I heard were words like “sepsis” and “pneumonia,” especially after previously seeing my father so sick with the latter. I knew how unwell I was feeling, but I never thought for a second that it would be that serious.

I had barely taken my biologic since the turn of the year, with all of the infections causing me to skip or delay doses. It hadn’t even occurred to me what untreated arthritis would look like. How long would my immune system take to recover? Would it recover?

It takes a village … (to care for the chronically ill)

Thankfully, the path to recovery wasn’t nearly as traumatic as those 2 or 3 weeks of uncertainty and fear.

My rheumatology nurses came up with a plan based upon the assumption that sulfasalazine, a drug I have taken virtually every day of my life since I was 12 years old, was the root cause of the issue. My use of biologics had been so disrupted during this 6- to 8-month run of poor health.

After a month of no treatments — no biologics or anti-inflammatories — and a painful arthritis flare in my hip, I was allowed to slowly reintroduce my biologic as a monotherapy. This pain reminded me of the reason why I take these medications. After a worrying and sore couple of months, my arthritis flare and the new psoriasis rashes that had reappeared started to fade.

Today, I am left with mild discomfort in my hip, but most importantly, a fully operational immune system. I haven’t had a single cold, virus, or infection since I went down to a monotherapy.

On reflection, this horrible experience reminded me of the importance of informed and educated patients and why I doggedly advocate for it. Even I, a so-called “patient advocate,” lost sight of the obvious signs in the fog of fear fueled by worrying about my attendance at work, financial security, and my responsibilities as a father.

Not only had my doctors failed to notice that my routine monitoring had fallen behind schedule, but so did I. I had repeatedly dismissed my wife’s inquiries about being due for a doctor’s visit and regularly put off going back for an appointment despite her concerns.

I knew that my treatments could mask a fever (I still feel feverish but have a lower body temperature) and was delaying my injections appropriately, but after decades of taking the same orange pills day in and day out, the respect I should have afforded sulfasalazine had diluted as much as the positive effect they used to have on my body.

I succumbed to the constant comments from other parents along the lines of “They’re always bringing something home at that age. Get used to it.” This comment gave no thought to my personal health situation.

I blamed my diet and my lifestyle. I told myself I was lazy or unhealthy, and in the latter, I was, but not for the reasons I told myself. I had gotten so used to being sick and feeling ill that I had lost the fight to advocate for myself. The physical symptoms were dragging down my mental health.

It took my wife, primary care doctor, rheumatology nurse, and countless others in our community watching events unfold from afar via social media to steer me toward getting help, even when I should have been the expert. I feel embarrassed for letting myself get so dangerously sick and stupid for missing the signs, almost as much as I feel angry that the doctors missed red flags and didn’t order the tests I needed to avoid this frightening incident.

But this experience has reminded me of the respect we must give to the treatments that keep us well and the important role that our caregivers, peers, and support systems play. We can so easily overlook these support systems when desperately seeking treatment or pills to ease our suffering.

So, thank you to those who were looking out for me when I could not care for myself — remember to thank your caregivers, too.