Having multiple IgG4-RD treatment options is a gift and a burden
Standing at this crossroads, I feel both terrified and strangely buoyed
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Note: This column describes the author’s own experiences with Rituxan (rituximab) and thoughts on other treatments. Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy.
Four and a half years ago, I would have taken any route that promised a chance at normalcy. Back then, the road to my IgG4-related disease (IgG4-RD) diagnosis felt endless, and the choices seemed nonexistent. Treatments were a single, muddy track I followed because there was no other option. Now, after years of infusions, setbacks, and victories, I’m about 80% closer to remission, and the landscape looks very different. Instead of one path, I now stand at a crossroads with four distinct options laid out in front of me.
That shift is both a gift and a burden. For the first time, I have agency. My doctors trust me, listen to me, and offer alternatives. That trust is new and precious. But having options means weighing trade-offs I never had to consider before. It’s like the comfort of a familiar routine versus the unknown promise of something better, the safety of incremental change versus the risk of a leap.
My mainstay since 2022 has been Rituxan (rituximab). It has been steady and predictable in its unpredictability; each cycle buys me months of relative calm, and each relapse has been less severe than the last.
Option 1: Stay the course, no changes. Option 2: Stick with Rituxan, but increase the frequency from every six months to every four months.
The third option was to switch to obinutuzumab. Like Rituxan, it is a monoclonal antibody therapy that depletes B-cells, but while Rituxan is chimeric (containing both mouse and human components), obinutuzumab is fully humanized. My team explained that, in theory, this option could lower long-term relapse risk. But the similarities to Rituxan made me wonder whether I would simply be trading one version of the same pattern for another.
The most radical option was to join a clinical trial my doctor is running. It’s promising, and it could change the course of my disease, but it also means giving up my regular treatments and accepting a 50% chance of receiving a placebo. It means embracing uncertainty not just for myself, but for the sake of science. It feels like stepping off a cliff with a safety harness that I cannot see.
So how did I decide?
I made a list of values instead of the typical pros and cons. My list included longevity, quality of life, physical and emotional bandwidth, and contribution to science for future patients. Then I mapped those values against practical realities, such as how my symptoms behave, how my body has tolerated treatments, the logistics of more frequent infusions, the emotional and physical cost of another relapse, and the long-term consequences of continuous immune suppression.
When I looked at the options through that lens, the picture shifted. Increasing infusion frequency might help in the short term, but it also accelerates a cycle that already strains my immune system. Switching to the humanized cousin of Rituxan offers a potential, not a transformation. Both options still require me to treat each of my conditions separately, stacking medications and infusions like bricks just to keep the structure from collapsing.
The trial was the only option that addressed the whole picture. If it works — and that is a big “if” — it could help not only with my IgG4-RD, but with the entire constellation of chronic, neurological, autoimmune, and inflammatory conditions I live with. It could reduce my need for multiple medications. It could free me from the constant rhythm of B‑cell depletion. It could give me a future that feels less fragmented.
That possibility comes with fear. I am already in a relapse, and the trial won’t start for another two months. I am agreeing to let my disease activity continue for now, knowing that if I get the placebo, it will take time to go back to one of my other options. That’s the hardest part: choosing to trust my body through a period of uncertainty.
I chose to believe in my body’s resilience and said yes to the trial, and in a strange way, I asked my body to trust and believe in my resilience, too.
My decision was not a rejection of the treatments that have carried me to this point. It was and is an act of self‑love first and foremost, choosing the option that could offer long-term stability rather than short-term predictability.
After that came trust: trust in the science, in my medical team, and in myself to sit with uncertainty for a while. It was also an act of agency, because after years of walking a path that offered no real fork in the road, only predetermined steps, I finally had a choice that truly belonged to me.
Standing at this new crossroads, I feel both terrified and strangely buoyed. The road here has been long and lonely, and the options I have in front of me now feel like proof that the struggle mattered.
Choosing is not a one-time event; it is a process I will revisit, adjust, and live with. For now, I have chosen a path that aligns with my values, and that, after years of having no choices at all, feels like a kind of remission in itself.
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.
Sarah
Thanks for the great article. The changes are scary, I get it!!! And also sounds like a well thought out and sound advice. Can't wait to hear how the trial goes!