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Clear out junk files and repair common Windows errorsFree Scan →Scan for outdated or missing drivers - takes under a minuteDriver Scan →Repair Windows errors before they cause bigger problemsFix Now →If you develop a fever or other new symptoms after CAR-T therapy, contact your CAR-T care team promptly and follow the instructions they gave you. Cytokine release syndrome (CRS) can begin with flu-like symptoms and become life-threatening. Symptoms alone cannot confirm CRS, and the treatment team should assess what is causing them.
What are the signs of cytokine release syndrome after CAR-T therapy, and when should I call my care team?
CRS is an inflammatory reaction that can occur when activated immune cells release cytokines after CAR-T therapy. It may be mild or severe. Fever is a key warning sign, but CRS can involve other symptoms too. The NIH Clinical Center advises patients to tell their medical team right away about listed symptoms; your treatment program’s contact instructions and temperature threshold take priority over general guidance. See the NIH Clinical Center CAR-T patient education sheet and the National Cancer Institute’s guidance on flu symptoms during cancer treatment.
- Fever, chills, or flu-like feelings
- Headache, muscle aches, nausea, or rash
- Fast heartbeat or low blood pressure
- Shortness of breath or trouble breathing
- Changes in thinking or behavior, including confusion or memory loss
- Seizures
Call the CAR-T team promptly about symptoms they have told you to report. Breathing problems, confusion or other significant neurologic changes, seizures, signs of low blood pressure, a fast heartbeat, or symptoms that are severe or worsening quickly need urgent medical assessment. Use your program’s emergency number or seek emergency care as directed; do not wait for a routine appointment.
When can CRS symptoms start?
According to the NIH Clinical Center’s patient education sheet, CRS symptoms generally occur within 1–2 weeks after infusion, but they can appear at any time, including several weeks later. That is a general description, not a prediction of an individual’s risk or a reason to stop following the care team’s instructions after the first two weeks.
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For covered autologous BCMA- and CD19-directed CAR-T immunotherapies in the United States, FDA’s June 26, 2025 safety communication said updated labeling advises monitoring for at least two weeks, with daily monitoring for at least one week, staying within proximity of a healthcare facility for at least two weeks, and avoiding driving for two weeks after administration. These are FDA labeling recommendations for the covered products; the patient’s care team provides the actual monitoring and travel plan. The FDA also said the products retain boxed warnings and Medication Guides addressing CRS and neurologic toxicity. See the FDA safety communication.
How is CRS different from neurologic toxicity?
Confusion, difficulty speaking or finding words, unusual sleepiness, memory changes, and seizures can signal neurologic toxicity, including immune effector cell-associated neurotoxicity syndrome (ICANS), rather than—or in addition to—CRS. These symptoms still require prompt attention. Patients and caregivers should report what they observe; the treatment team determines the cause and severity. The National Cancer Institute describes CRS treatment and neurologic effects in its CAR T-cell overview.
Do not use a symptom list to diagnose CRS or decide that a symptom is harmless. The National Cancer Institute notes that “Doctors and nurses cannot know for sure when or if side effects will occur or how they will affect you” in its T-cell transfer therapy guidance.
What should patients and caregivers do?
- Know the contact plan. Before leaving the treatment center, make sure you know which number to call during and after business hours, what symptoms to report, and where to go if urgent care is needed. Ask which symptoms require an immediate call and whether any can be managed at home.
- Report symptoms using the program’s instructions. Share when the symptom began, how it is changing, and any temperature reading if you have one. Use your CAR-T program’s fever threshold and instructions; do not substitute a general cancer fever cutoff.
- Escalate severe or rapidly worsening symptoms. For serious breathing difficulty, seizure, major confusion or other acute neurologic change, or signs of circulatory problems, follow the team’s emergency instructions or seek urgent medical evaluation.
- Keep following the monitoring plan. A period without symptoms does not change the care team’s directions about monitoring, proximity to care, or driving.
A thermometer can help you check and report your temperature, but it cannot diagnose CRS or replace calling the team. Follow the treatment program’s specific instructions about when and how to take a reading.
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CRS treatment is clinician-directed and depends on the patient’s condition. The National Cancer Institute notes that clinicians use tocilizumab for many patients and may use steroids when needed. Do not start or change medicines to treat suspected CRS unless the CAR-T team directs you to do so. More information is available from the NCI’s CAR T-cell treatment overview and its definition of cytokine release syndrome.
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