Post-Drug Syndrome Survey
Since 2019, propeciahelp.com has requested the participation of patients suffering persistent health problems for at least three months following the use and cessation of finasteride. Having young patients repeatedly presenting with an ostensibly similar syndrome from other antiandrogenic endocrine disruptors, we also gathered responses from patients suffering after using a drug/substance of a class in the following list:
5alpha reductase inhibitors
Isotretinoin
Serotonergic Antidepressants
Individuals experiencing similar persistent problems after use of other antiandrogenic substances such as saw palmetto extract or topical androgen receptor antagonists were permitted to participate.
From the major patient groups, we have at the time of writing over 265 post-finasteride submissions, as well as submissions from over 100 post-SSRI patients and over 50 post-Accutane patients.
Development, Purpose and Aims
This ambitious survey is the result of thousands of hours of research and development. Software development was undertaken by non-patient volunteers. Input was gratefully received from organising members and patients from the respective communities suffering persistent health problems after exposure to a drug or substance, including the Post-Accutane and "PSSD" communities. It was based upon detailed consideration of the many years of patient reports, clinical findings, and thorough review of the published medical literature surrounding the syndrome. Feedback was received from medical professionals.
We acknowledge the inherent shortcomings of subjective reporting and purposive non-random sampling. However, every effort has been made to focus upon the use of widely adopted validated instruments, measures and established good practice standards of surveying wherever possible while ensuring the variable phenotypical presentations within the conditions are represented meaningfully.
The purpose of this survey is to accurately characterize, through representative self-reported data, the persistent sexual, physical, and neurological damage that occurs in a subset of consumers, currently termed PFS, PAS, PSSD, etc depending on the drug taken. A secondary objective is to evaluate potential overlap between the persistent health problems caused by the various substances.
As well as reporting symptoms via an ad-hoc questionnaire, the survey includes the following validated questionnaires to further assess the impact on the health and quality of life of affected patients:
The International Index of Erectile Function (IIEF)/The Female Sexual Function Index (FSFI)
RAND-36 (SF-36)
Depression Anxiety Stress Scale (DASS-21)
Short Assessment of Patient Satisfaction (SAPS)
Where appropriate, patients are asked to respond to questions considering 4 points in time: Before the drug, during use, in the 4 week period after cessation and the past 4 week period at the time of taking.
Background and Necessity
The propeciahelp forum contains over a decade of patient experiences of the variably severe suffering caused in a subset of consumers following exposure to 5 alpha reductase inhibitors. These self reports have recently been the focus of scientific publication. Until now, the patient community has been unable to effectively gather representative data regarding the wide-ranging, counter-intuitive and disturbing symptoms of what is currently termed Post-Finasteride Syndrome.
Although several recent publications have made strides towards a basic acknowledgement of the situation, the current level of understanding and investigation into the pathophysiology of PFS remains unacceptably low. The degree of harm, the lack of answers, and pharmaceutical, clinical and regulatory failures in alerting the public to this risk has created an unsustainable situation.
PFSNetwork, providing propeciahelp, find ourselves a reluctant front line for a deeply serious medical condition that clinicians are unequipped to remedy or protect their patients from. There is currently no way of knowing who is at risk until it is too late. The severity of PFS is not a dose-dependent phenomena, with many of our most severely affected patients and known completed suicides having had a remarkably brief exposure.
Our focused and structured self-reported data gathered via the survey aims to provide a clear counter to faulty speculations that could currently misinform the scientific and medical communities.
Moving Forward
The clinical profiles recorded in current medical literature surrounding PFS can be incomplete or selected by relevance to the research interest of the investigating clinician or scientist, resulting in misrepresentations of the syndrome’s extent and/or presentation in some discussions.
The survey will provide pilot data that can inform future investigation into pathophysiology. Further molecular diagnostic research is of the utmost importance for prevention via effective screening of patients for suitability when anti-androgenic therapies may be indicated, and the discovery of treatments for the many patients suffering with PFS.
With increasing preclinical evidence, clinical reporting and clear adverse event data, the speculation from some quarters over whether or not an arbitrary bar of evidential quality has been reached must be balanced with the severity of harm that young men are reporting as a result of taking the drug.
We would strongly encourage scientists who are interested in the condition or the data being collected to reach out to us. Finally, we ask those in the scientific and medical communities to consider the real human cost of this induced condition: the immeasurable suffering caused by the loss of physical, mental and sexual health.
To existing patients, we thank you for your continued courage and participation in the survey.