My rituximab infusion for IgG4-RD didn’t quite go as planned

Note: This column describes the author’s own experiences with various medications and therapies. Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy.

September was supposed to be my month — not only because I was celebrating my birthday, but because I was finally due to receive another rituximab infusion, the treatment that would help get me back on my feet.

But, as usual, my immunoglobulin G4-related disease (IgG4-RD) decided to be the spoiler.

I was actually looking forward to my infusion even more than my birthday, which I’d be spending in the wonderful company of my husband and children. I had even rented a small boat so we could spend an afternoon cruising along one of the Netherlands’ idyllic little rivers. But my focus was entirely on the Monday after my birthday.

That was when the infusion would help relieve my fatigue and increasing joint and muscle pain caused by IgG4-RD, no matter how stubbornly the symptoms tried to hold on.

Unfortunately, things turned out differently. Thanks to my compromised immune system, ta-da! A bladder infection joined the mix.

To be fair, it was probably, in part, my own fault.

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My rheumatologist had prescribed me a new painkiller, which I had to take once a day. It worked very well against my muscle and joint pain, but it also made me feel like a grieving widow, even though my beloved husband was very much alive and well. (Thank goodness!)

After about two weeks, I started to suspect that my gloomy mood was a side effect. So, being the stubborn person I am, I stopped taking the painkiller a week before my rituximab infusion. And just like that, those waves of grief disappeared like snow in the sun.

I was so relieved to discover that I wasn’t dealing with depression on top of everything else — it was “just” a side effect of yet another medication I seem unusually sensitive to. Medication side effects are the free “bonus” of chronic illness.

I was also relieved that I ignored the discomfort in my lower abdomen and the fact that I suddenly needed to urinate far more often than usual. That is, until Friday, the day before my birthday.

On that day, I was completely wiped out. I felt awful. Then I went to the bathroom, and my bladder more or less exploded.

I think the anti-inflammatory painkiller I’d been taking had been suppressing some of the pain and inflammation of the infection — until I stubbornly stopped taking it. In that moment, I knew exactly what I had to do.

Silvia Borgers and her husband, Peter, enjoy a boat trip for Silvia’s birthday in September 2026. (Courtesy of Silvia Borgers)

I called my general practitioner’s office. Their staff knows me so well that I don’t even have to give my date of birth anymore. That’s always a bad sign, but also quite convenient. The receptionist said she would discuss it with the doctor, and half an hour later, I was able to pick up antibiotics from the pharmacy.

My next phone call, one I made with a sinking feeling in my stomach, was to the rheumatology department at Radboud University Medical Center in Nijmegen, Netherlands, where my infusion was scheduled to take place.

The nurse at the hospital consulted my doctor, and unfortunately, the decision was nonnegotiable: The infusion had to be postponed.

You are not allowed to receive a rituximab infusion if you have an active infection, and my doctor wants me to wait an additional two weeks after completing the course of antibiotics. The reason is simple: Rituximab suppresses the immune system. While this is helpful in controlling autoimmune diseases such as IgG4-RD — in which the immune system works far too hard and causes serious body-wide inflammation — the downside is that it leaves you far more vulnerable to infections.

Deep down, I knew this would be the outcome, but the decision still hit me hard. So I cried.

But in three weeks, I’ll have another chance to receive my infusion.

As a consolation, I was prescribed a new painkiller that’s supposed to last 12 hours. It does work, but after about 10 hours, it seems to take a little vacation of its own. I may have to ask my doctor whether the dosage can be increased.

Fortunately, I received a huge stack of books for my birthday, and I now have plenty of time to read them. Honestly, that’s rather wonderful.

Note: IgG4-RD News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of IgG4-RD News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to IgG4-RD.