Real-World Patient Experience with Linzess (Linaclotide): Efficacy, Discontinuation, and Withdrawal Symptoms
DOI:
https://doi.org/10.66381/jod.2025.002Keywords:
Linzess, Linzess withdrawal, Linaclotide, IBS-C treatment, Linzess for IBSAbstract
Background: Linaclotide (Linzess) is a guanylate cyclase-C agonist used for the treatment of irritable bowel syndrome with constipation (IBS-C) and chronic idiopathic constipation (CIC). While clinical trials support its effectiveness and safety, real-world data from patients remain essential for understanding long-term outcomes, discontinuation causes, and withdrawal experiences.
Objective: To assess the effectiveness of Linaclotide use, reasons for discontinuation, and post-discontinuation symptoms through a patient-reported survey.
Methods: An online survey (social media) was conducted with 86 respondents who had used linaclotide. Questions focused on duration of use, reason for prescription, symptom improvement, causes of discontinuation, and post-discontinuation gastrointestinal and systemic symptoms.
Results:
Among 86 respondents, 48% used linaclotide for less than three months and 37% for more than six months. The primary indication was constipation (71%) followed by irritable bowel syndrome (29%). Complete symptom resolution was reported by 35% of patients, while 47% had partial improvement and 18% reported no benefit. Discontinuation was common, with 49% stopping due to side effects and 29% due to cost or insurance issues. After discontinuation, abdominal pain (46%) and constipation (34%) were the most frequent gastrointestinal symptoms, whereas systemic withdrawal-like symptoms included headache (24%), anxiety or depression (24%), fatigue (20%), and sweating (12%).
Conclusion: While many patients experience some benefit from linaclotide, side effects, affordability, and symptom recurrence after discontinuation remain challenges. Post-discontinuation withdrawal-like symptoms may occur and warrant clinical recognition and management.
Keywords: Linaclotide; constipation; IBS-C; side effects; Linzess
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References
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Data Availability Statement
Data is made available upon request.
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