We are pleased to announce the launch of our comprehensive Post-Drug Syndrome Survey.
propeciahelp.com is requesting the participation of patients suffering persistent health problems for at least three months following the use and cessation of a drug, substance, or drug/substance of a class in the following list:
- Finasteride (Propecia, Proscar, generics)
- Dutasteride (Avodart, Duodart, generics)
- Isotretinoin (Accutane, Roaccutane, generics)
- Antidepressant (various including SSRI class medications)
- GnRH analogue such as Leuprorelin (Lupron, Eligard), Goserelin (Zoladex) or Triptorelin (Decapeptyl, Gonapeptyl)
- Androgen receptor antagonist (including Cyprotone acetate, Spironolactone, Bicalutamide, Enzalutamide, Abiraterone acetate, RU 58841)
- Saw Palmetto extract
- Phenolic compound supplement (including Milk Thistle, Resveratrol, Rutin, Genistein)
- Minoxidil (Rogaine, generics)
Active members of the propeciahelp forum have been issued a unique invitation via email. Patients experiencing persistent health problems following use of the above substances or classes, please visit the FAQ Topic in the propeciahelp forum for more information on the survey and how to participate.
Development, Purpose and Aims
This ambitious survey is the result of thousands of hours of focused research and development. Input was gratefully received from organising members and patients from the respective communities suffering persistent health problems after exposure to a drug or substance with endocrine disrupting properties, including the PFS, PAS, PSSD and Lupron patient communities. It was based upon detailed consideration of the many years of patient reports, shared clinical findings, and thorough review of the published medical literature surrounding the syndromes. Feedback was additionally received from medical professionals including those who have produced publications centered on PFS. 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. Additional software development was undertaken by non-patient volunteers.
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. An additional objective is to evaluate potential overlap between the persistent health problems caused by the various substances. The survey will assess the impact of the syndromes on the health and quality of life of affected patients, including the following questionnaires:
- 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)
Patients will have the opportunity to report test results such as serum biomarkers, and share reactions to therapeutic attempts in a structured manner. Aggregated reports will be generated from submitted data via an analytics platform currently in development, which will launch in the future and mark the second phase of this project.
Background and Necessity
The propeciahelp forum contains over a decade of patient experiences of the variable persistent suffering caused in a subset of consumers following exposure to 5 alpha reductase inhibitors, predominantly Finasteride, and these self reports have recently been the focus of scientific publication. Until now, the patient community itself has been unable to effectively gather representative data regarding the wide-ranging, counter-intuitive and deeply disturbing reality of what is currently termed Post-Finasteride Syndrome. Although several recent publications have made strides towards a greater acceptance and basic acknowledgement of the situation, current etiological understanding and the level of ongoing investigation into the pathophysiology of this condition remains unacceptably inadequate. The degree of harm, the lack of answers, and pharmaceutical, clinical and regulatory failure to alert the public to this risk is not a situation that can continue.
Propeciahelp finds itself reluctantly representing the front line of a deeply serious medical condition that clinicians are unequipped to provide help with and unable to protect their patients from. The medical profession cannot currently offer disease-modifying treatment nor in the majority of cases even symptomatic relief should this medication be prescribed to the wrong person. As the severity of PFS is not a dose-dependent phenomena, with many of our most severely affected members and known completed suicides having had a very brief exposure, there is currently no way of knowing who is at risk until it is too late. The status quo of inadequate patient warning regarding PFS represents an urgent public health issue that can only be addressed via etiological understanding.
Our focused and structured self-reported data gathered via the survey aims to provide a clear counter to faulty preconceptions that can currently misinform the scientific and medical communities. Writing in the International Journal of Trichology with a purported aim of providing practical recommendations to physicians, Rezende et al asserted that “whether the PFS represents a nocebo reaction or a real drug adverse event is irrelevant”. We categorically refute this. Conversely, summarising the recent publication “The Post-finasteride Syndrome: Clinical Manifestation of Drug-Induced Epigenetics Due to Endocrine Disruption”, Traish et al appropriately concluded:
The medical community has an obligation not to turn a blind eye on this rare yet debilitating condition in young men. Patients with this condition should not be stereotyped or stigmatized by untrained and unprepared clinicians, due to lack of awareness and knowledge pertaining to this new and rare syndrome. Greater awareness and education is needed among the medical and scientific communities in order to develop better approaches for managing men with PFS. It is paramount that steps are taken to develop better understanding of the underlying mechanisms contributing to the onset and progression of PFS and to promote educational and training programs to increase awareness and improve management of this condition.
It is the view of propeciahelp.com that no publication to date has adequately assessed the full scope of this condition. The clinical profiles recorded in current medical literature surrounding PFS are often 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 peer-reviewed discussion. The survey will provide pilot data that can inform future pathophysiological investigation. Further 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.
It is a matter of time before what is currently termed Post-Finasteride Syndrome is acknowledged as a groundbreaking and novel disease, with great implications in broader physiological understanding. With clear conclusions from recent scientific literature reviews that “the occurrence of persistent adverse sexual, physical, neurological, and psychiatric side effects after 5α-reductase inhibitor is well supported by the existing data“, the time for debating the existence of this issue has long since passed. The time to accurately acknowledge the syndrome and move towards mechanistic understanding is overdue. As Post-Finasteride Syndrome Foundation CEO John Santmann recently told Dutch newspaper De Volkskrant:
“Doctors prescribe a drug that completely disrupts the normal functioning of one of the most important hormones in the body—testosterone—expecting there to be no serious consequences for the patient. It’s preposterous,” Dr. Santmann continues. “And with that, a lot of money is generated for various players in the industry, which ultimately results in government agencies being lobbied away from taking a critical look at the situation.”
The value we place on our own lives and those of our fellow affected patients should not be underestimated. We would strongly encourage more research 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 look forward to your participation in the survey.