Post-isotretinoin syndrome is a devastating condition characterized by sexual and cognitive dysfunction. It arises after cessation of isotretinoin, a medication routinely given to adolescents to treat acne. Our objective is to survey a large cohort of sufferers to better understand the syndrome from a patient perspective.

Post-isotretinoin syndrome is a devastating condition characterized by sexual and cognitive dysfunction. It arises after cessation of isotretinoin, a medication routinely given to adolescents to treat acne. Our objective is to survey a large cohort of sufferers to better understand the syndrome from a patient perspective.

After accounting for the inclusion criteria, a total of 144 individuals (101 male, 43 female) from 21 countries completed the survey, with 44% from US, 7.2% from Canada, 28.9% from Europe and 19.8% from other countries. The average age at which isotretinoin was taken was 20.7 (+/-7.4), with the most common treatment duration being 4-6 months (36.8%) but ranging from less than 1 month to more than 12 months. The primary reason for discontinuing isotretinoin was because acne had resolved (59.7%) followed by drug side effects (31.2%). While taking isotretinoin, 51.4% reported suffering from sexual dysfunction (SD), which increased to 62.5% after stopping isotretinoin. Overall, 52.6% reported their symptoms worsened and only 12.8% saw symptom improvement after drug removal. Sexual symptoms include erectile dysfunction/vaginal dryness (54.2%), reduction/loss of sexual desire (46.5%), change in genital sensation (41.7%), compromised orgasm (34%), and other sexual symptoms (6.25%) such as genital atrophy and ejaculate dysfunction. Beyond SD, 84.7% suffered from other symptoms including cognitive impairment (55.7%), mood changes (54.2%) and changes to skin (50.4%), vision (40.4%), bowel (36.6%) and bladder (17.6%) function. Finally, 52.4% stated post-isotretinoin caused them to have suicidal thoughts at least 1-2 times per week.

Isotretinoin usage causes a wide range of sexual, mental health and other systemic symptoms that for most individuals worsen after isotretinoin cessation. Post-isotretinoin syndrome results in a high prevalence of suicidal ideation, though it is unclear if the suicidal thoughts are a direct side effect from isotretinoin, are a secondary side effect due to the difficulty coping with the isotretinoin-induced sexual dysfunction and other symptoms, or are due to lack of support from medical professionals.

Post-isotretinoin syndrome affects men and women around the world. While the incidence is unknown, the sheer number of people prescribed these common medications makes research into the syndrome a public health priority and appropriate informed consent is crucial. This study highlights the severity and diverse nature of symptoms, and the impact it has on mental health.