Ending Rituxan treatment revealed how beneficial it had been for me
I stopped treatment in order to enroll in a clinical trial
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Note: This column describes the author’s own experiences with Rituxan (rituximab). Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy.
It may seem strange, and it certainly feels strange, to miss having a five-hour infusion that completely depletes your B-cells and takes a large portion of your immunity along with them.
Most people don’t look forward to sitting in an infusion chair for hours, yet here I am, almost nostalgic for it. I don’t say this because infusions are enjoyable, but rather because they became a steady presence in my life. Every six months for four years, I received two 1,000-mg Rituxan (rituximab) infusions, spaced two weeks apart.
Over time, I learned that Rituxan followed a remarkably consistent 90-day cycle in my body. Through careful tracking, I began to recognize recurring symptom flares, periods of improvement, and the general ebb and flow of my disease activity. Instead of assuming the worst whenever a symptom acted up, I could look back through my notes and remind myself that I had been there before.
My body was speaking a language I didn’t understand at first, so I had to become a student of both my body and its lingo. I learned the warning signs, the relapses, the flares, and the alleviations. I learned what deserved my attention and what simply required patience.
Perhaps that is what I appreciated most about Rituxan. It gave me a reference point. When so much of life with immunoglobulin G4-related disease (IgG4-RD) can feel uncertain, having something familiar to measure against becomes incredibly valuable.
Unbeknownst to me, my last Rituxan infusion took place in December 2025. As my next scheduled treatment approached in June of this year, I decided to enroll in a clinical trial instead.
Why I did it
In doing so, I willingly stepped away from a treatment plan I knew well and into unfamiliar territory. I made that choice because research matters. Progress requires participants. Patients like me, as well as future generations of patients, need more and better treatment options. The only way to discover them is for people to volunteer to help advance the science and knowledge behind them.
That doesn’t mean the decision has been easy. The clinical trial experience has forced me to sit with something many IgG4-RD patients know well: not knowing.
Not knowing what tomorrow’s symptoms might mean, whether the treatment is helping, or if what I am experiencing is disease activity, improvement, hope, coincidence, or something else entirely. In a double-blind study, this is not a flaw in the system. It is part of the process.
As I wait to learn what this next chapter holds, I find myself appreciating Rituxan in a way I never expected. Symptoms that had faded into the background eventually began to reappear after I stepped away from treatment, and experiencing their return was disorienting. It reminded me just how much of my disease had become manageable during those years.
Still, I chose to trust the process, and that is exactly what I intend to do.
Whether this clinical trial ultimately proves beneficial remains to be seen, but it has already taught me something important: Sometimes I don’t fully appreciate what I have until I step away from it in pursuit of something greater. While I hope that pursuit helps move treatment forward for all of us, it has also deepened my appreciation for the therapy that saved and carried me through the last four years.
In the end, there is one thought that continues to bring me comfort: If this path doesn’t lead me to remission, I know, at least for now, that Rituxan remains in my corner. It is my backup plan and my safety net.
Honestly, that is the greatest gift Rituxan has given me. Simply knowing it is there if I need it has allowed me to take this leap into the unknown. It gives me the confidence to explore new possibilities, the courage to participate in research, and the strength to keep moving forward.
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.
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