Why I question if Enjaymo is right for me

Note: This column describes the author’s own thoughts about Enjaymo (sutimlimab-jome) and experiences with Rituxan (rituximab). Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy.

Yay! Happy days to come!

Such was the reaction of many in the cold agglutinin disease (CAD) world when, in February 2022, a breakthrough drug — Enjaymo (sutimlimab-jome) — was announced. It became “the first and only FDA-approved therapy for CAD, according to its developer, Sanofi,” referring to the U.S. Food and Drug Administration. It’s supposed to stop hemolysis, the destruction of red blood cells.

That would mean more energy for me. I anticipated no more brain fog. Perhaps I’d heal from infections at a faster rate, and have fewer infections overall. More importantly, maybe I could play with my grandchildren and do stuff with them. This drug seemed like a miracle and a return to normalcy.

A recent article in Cold Agglutinin Disease News states, “Long-term treatment with Enjaymo (sutimlimab-jome) led to sustained improvements in life quality and reductions in fatigue for people with cold agglutinin disease (CAD), according to 2.5 years of data from the Phase 3 CARDINAL clinical trial.” It then quotes the trial’s researchers, who wrote, “[Enjaymo] provides sustained and durable treatment benefits in chronic CAD, including a continued meaningful impact on patient [quality of life] in the long term.”

That is a happy outcome. I’d love to become active again and not be exhausted from merely dressing and getting ready for the day.

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The devil is in the details. Always ask questions. These two maxims have fueled my quest to research things for myself. How is Enjaymo administered to a patient? Will it be injections or infusions? How much time is involved with a usual treatment?

I went to the source: the Enjaymo website. The dosage information there instructs doctors to “Administer ENJAYMO intravenously weekly for the first two weeks, with administration every two weeks thereafter. Administer ENJAYMO at the recommended dosage regimen time points, or within two days of these time points.”

That gave me pause. I can tell from some symptoms I see and feel in my body today that I should check in with my doctor and evaluate whether I need treatment. But how will I respond if he recommends this new therapy?

As wonderful as it sounds, unless Rituxan (rituximab) wasn’t working at all, I’d decline the Enjaymo. In the past, Rituxan has taken about a month of once-a-week treatments, with a blood test two weeks later to monitor my response. Then, if all was well, and so far it’s gone very well, I’d go on my merry way (or is it my “Mary” way?) until the next round.

My last treatment was in December 2020. That’s now three years without being stuck for an intravenous infusion. Not getting stuck is a victory in and of itself.

On the other hand, Enjaymo is administered once a week for two weeks and then every two weeks thereafter. Thereafter? I understand that to be with no end in sight. I don’t want to do that. My husband and I would have to quit working overseas in Sentani, Papua, Indonesia. The school where he’s a band director would be without one. Our foster boys would have to hunt for new “parents” so they could attend school here. My husband would have to find work in our hypothetical new town in the United States, while I’d have to travel biweekly for infusions. Our entire mode of living would be changed if I were treated with Enjaymo.

The article ends by quoting the researchers, who wrote, “Overall, … [Enjaymo] had a positive impact on patient well-being as recorded by [patient-reported outcomes]. … This impact on patient experience is an important factor for clinical decision-making when treating a disease with a heavy burden on patient [quality of life].” The article goes on to say that “the fact that most of these measures deteriorated after ending treatment favors ‘the recommendation that patients should remain on treatment,’” as the researchers said.

Apparently, Enjaymo is not a one-and-done (or four-and-done) treatment. It’s a long-term commitment. That seals the deal for me. If I needed to make a decision today, I would choose to continue with Rituxan. I’m not ready to be stuck every two weeks, nor do I want a port. That’s just me.

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.