Post-drug syndrome (PDS) is a condition that results from persistent side effects after withdrawing medications such as antidepressants, isotretinoin and finasteride. PDS is associated with a large array of symptoms including sexual dysfunction, cognitive impairment and depression. Little is known about the underlying mechanism that leads to PDS, which people are at risk and how patients can be successfully treated. In this study, we aimed to assess where PDS patients sought care and how physicians responded to patients’ concerns.

An anonymous Qualtrics survey was distributed via online support forums and social media platforms, such as X, Reddit, and Facebook targeting individuals over the age of 18 who reported persistent symptoms post antidepressant, finasteride or isotretinoin use.

A total of 753 men (77.8%) and women (22.2%) with PDS were enrolled in the study. Of these, 641 (85.1%) sought professional care to help manage their symptoms, of which 319 previously used antidepressants (AntiD), 245 finasteride and 77 isotretinoin. The primary care physician was consulted most frequently (73.5%) followed by the urologist (47.0%), endocrinologist (36.2%) and neurologist (35.9%). Urologists were primarily consulted by patients suffering from post-finasteride syndrome (60.4%), while 40.4% of AntiD and 31.2% of isotretinoin patients saw a urologist for their condition.75.5% of patients consulted more than 1 medical professional. Overall, patients shared that very few medical professionals were knowledgeable about PDS, with endocrinologists (14.7%) and urologists (14.0%) being the most educated. Half of medical professionals were dismissive and didn’t believe in PDS, with some patients reporting that their medical professional laughed about the idea of PDS. Thirty-nine percent of medical professionals seemed open to the idea of PDS but were unsure how to proceed. Patients reported trying various interventions including medication, physical therapy, dietary changes, yoga/meditation, electrical stimulation and LiSWT. However, interventions were largely ineffective at relieving symptoms. Patients suffering from post- isotretinoin were most responsive to treatment and saw moderate to significant improvement in symptoms with medication (12.7%), physical therapy (9.8%) and dietary changes (12.1%).

Our results indicate that patients suffering from post-drug syndrome are seeking the help of a diverse group of physicians, especially primary care physicians. However, physicians seem to be poorly educated about the condition, with half not even believing PDS is real. Furthermore, interventions appear to be largely ineffective at relieving symptoms.

PDS is a condition with tremendous unmet need. The lack of physician education about PDS only exaggerates the struggles that this patient population faces.  Very few patients had meaningful improvement in their symptoms over time.  Research is needed to identify effective therapies.