With my health from CAD steadily declining, I call in the cavalry, part 3

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

Last in a series. Read parts one and two.

The last crack of lightning started the herd running. I was part of a cattle drive, and stampeding over the high bluff of the river was something we did not want. The herd would plunge pell-mell over the edge and either be killed in the fall or drown in the raging torrent.

“Wake up, Mrs. Lott. I need to take your vitals.”

There was an urgent shaking at my shoulder. I reluctantly left the cattle drive of my dream and woke up. I had finally drifted into sleep, but the nurse needed my attention. I was in the intensive care unit of the East Alabama Medical Center and receiving adrenaline to help bump up my blood pressure. My infusion side effects had taken a serious turn.

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Stampede to receive help

On Jan. 18, I went to the emergency room with extreme joint pain about a week after I received my first infusions of a combination of rituximab and bendamustine. The doctor thought I was running a fever and began an antibiotic. At some point, my blood pressure plummeted to 50-something over 20-something.

Tests were run, causes were eliminated, and it appears my symptoms were side effects of the infusions. My side effects were extreme, but there are others that are more common.

All of this took me by surprise. I had the same combination therapy four years earlier for my cold agglutinin disease (CAD) and had only minimal side effects of fatigue and nausea. This time, everything went well at first. Then everything escalated.

I hesitated before calling for the cavalry — by which, I mean the paramedics and an ambulance. When I first began to show symptoms of CAD and then began my long quest for a diagnosis, I was often called a hypochondriac. That stung and has stuck with me. This time, however, I had an expert in the family. I called my daughter, a 911 operator.

“Mom! Call! Right now, call! This is exactly why people call the paramedics. You need help,” she said firmly. I hung up and called.

Even old livestock can learn new tricks

I learned something. Because those of us with CAD don’t have a sufficient immune system, the threshold for treating a fever is 100 F (38 C). Until that Sunday, I would let my body fight a fever itself until it reached 102 F (39 C). Then I would reach for a fever reducer. Now I take the medicine at the lower number.

I left the hospital on Jan. 22. The infection and the infusions took all my energy, and I am still convalescing in bed. My next infusions began on Feb. 6, so there are more side effects to experience.

Rituximab isn’t a chemotherapy drug. It is a monoclonal antibody that I’ve received every time I’ve needed it. I’ve had minimal side effects with it and have been able to continue my usual activities afterward.

This time was different. Shortly after treatment began, my hands started itching. At first, I didn’t think anything of it. I did a quick search for rituximab side effects and confirmed I was having a reaction. The itching spread, and my face became flushed, almost as if I were sunburned. Treatment was immediately stopped.

The curtains were pulled, and staff gathered around to assist and monitor the situation. I was given more pre-meds, time passed, and the decision was made to try a slower infusion. Again, another reaction.

The herd turns away from the high bluff

Thinking the third time’s a charm, the infusion was begun again at an extremely slow rate. It took the reaction longer to begin this time, but it did. The itching in my palms felt like a systemic poison ivy rash I once had. The rituximab was stopped. Although I was stabilized quickly, I was transferred to the emergency room for close monitoring.

In the first part of this series, I wrote, “I left that day feeling like I was finally on the right track again.” I was wrong. In the second part, I wrote that “counseling is on hold.” It still is.

Here, I’ve shared a glimpse into the side effects I’m having. As many of you have written in your comments, while CAD is a rare disease, we bond together as we deal with it.

Note: Cold Agglutinin Disease 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 Cold Agglutinin Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to cold agglutinin disease.