Accepted for/Published in: Journal of Medical Internet Research
Date Submitted: May 29, 2025
Date Accepted: Sep 28, 2025
Date Submitted to PubMed: Oct 1, 2025
Real-World Use of Topical Ruxolitinib in Vitiligo: A Retrospective Cross-Sectional Mixed-Methods Infodemiology Study of the r/Vitiligo Subreddit
ABSTRACT
Background:
Vitiligo significantly impairs quality of life. Topical ruxolitinib is a novel Janus kinase inhibitor approved for non-segmental vitiligo, but real-world patient experiences, particularly regarding efficacy, side effects, and access challenges following approval, are not fully captured by clinical trials. Online patient forums like Reddit offer valuable insights into these aspects.
Objective:
To analyse discussions on the r/Vitiligo subreddit regarding topical ruxolitinib to understand real-world patient experiences, perceived treatment success, side effects, access barriers, and overall sentiment.
Methods:
A retrospective observational analysis of posts and comments mentioning ruxolitinib or Opzelura® on r/Vitiligo (January 2022–December 2024) was conducted. After filtering and preprocessing, 2,950 entries were analysed. Computational linguistics, including sentence-transformer embeddings for semi-supervised topic classification ("Therapy Success," "Side Effects," "Insurance & Cost") and VADER for sentiment analysis, were employed. Temporal trends were analysed, and model performance was validated manually. Representative qualitative data were reviewed.
Results:
Discussions increased following regulatory approvals. "Therapy Success" was the largest cluster (1765 entries, 59.8%) with positive sentiment (avg. 0.473), often detailing facial repigmentation and use with phototherapy. The "Side Effects" cluster (558 entries, 18.9%) had negative sentiment (avg. -0.110), frequently mentioning application-site acne but also fatigue. The "Insurance & Cost" cluster (491 entries, 16.6%) had positive sentiment (avg. 0.349), dominated by discussions on high costs and access difficulties, alongside strategies like co-pay programs. Model validation showed substantial agreement (Accuracy 88.4%, F1 0.893, Kappa 0.801).
Conclusions:
Real-world patient discussions on Reddit reflect positive perceptions of ruxolitinib efficacy, especially for facial vitiligo, corroborating trial data. However, significant concerns regarding side effects (including those less emphasized in trials) and substantial barriers related to cost and insurance access are prevalent. Social media analysis provides valuable insights into patient experiences and unmet needs, complementing traditional pharmacovigilance and health services research. Clinical Trial: N/A
Citation
Request queued. Please wait while the file is being generated. It may take some time.
Copyright
© The authors. All rights reserved. This is a privileged document currently under peer-review/community review (or an accepted/rejected manuscript). Authors have provided JMIR Publications with an exclusive license to publish this preprint on it's website for review and ahead-of-print citation purposes only. While the final peer-reviewed paper may be licensed under a cc-by license on publication, at this stage authors and publisher expressively prohibit redistribution of this draft paper other than for review purposes.