An important milestone in the visibility and understanding of Post-Finasteride Syndrome: Announcing pfsnetwork.org

We are pleased to launch our new website, a central resource dedicated to furthering awareness and scientific investigation of Post-Finasteride Syndrome.

Why?

As providers of the largest and longest-established PFS patient community, propeciahelp, we are unsustainably shouldering a serious clinical problem that is resulting in disability and, too frequently, suicide.

Sexual and mental health issues are stigmatising and isolating. Clinical education and patient-focused molecular diagnostic research are an urgent priority. A perfect storm of novelty, rarity, and counter-intuitive clinical presentation compounds clinical, pharmaceutical and regulatory failures. This has entrenched a situation in which internet resources such as propeciahelp represent the only support for patients suffering profoundly.

The launch of pfsnetwork.org is an important milestone in addressing the significant challenges we face as patients and patient advocates. We hope the resources provided by PFS Network will improve patient care, inform scientific research, and help inform consumers of the serious health risks associated with taking finasteride for androgenic alopecia.

“Wonder drugs”

In a 2019 editorial discussing risk associated with antiandrogen treatments in prostate cancer, Rosario and Burke wrote the following:

“The role of the treating physician is made all the more difficult in this era of media sound bites and patient expectations, where men have heard of the wonder drugs and insist on them. The scientific community needs to respond and remain circumspect: regulatory bodies, trial oversight committees, authors, reviewers, and editors have a duty of care to the population as a whole to ensure that the correct health warnings go out alongside the positive messages.”

— Rosario & Bourke, Cardiovascular Disease and the Androgen Receptor: Here We Go Again? 2019

If this is the necessary caution regarding treatments for life-threatening cancer, it is unfathomable that there should not be all the more scrutiny over the marketing-driven prescription of antiandrogens to young healthy men for hair loss.

“The time to act is now”

Data increasingly reveals a high reporting of extremely serious adverse events in a younger cohort. This risk is not dose dependent, and patients and their families continue to describe the devastating effects of Post-Finasteride Syndrome.

“It is imperative that the medical and scientific communities do not dismiss this syndrome and stereotype patients afflicted with serious and debilitating disorder. The scientific and medical communities need to develop better understanding of the pathophysiology of this syndrome in order to develop new and better tools for patient treatment and management. Increased physicians as well as patients’ awareness of PFS is another dimension that needs to be emphasized and acted upon by the medical profession. The time to act is now.”

— Traish, The Post-finasteride Syndrome: Clinical Manifestation of Drug-Induced Epigenetics Due to Endocrine Disruption, 2018

We are currently building our professional network and ask scientists to contact us directly at contact@pfsnetwork.org.

Thank you for your support,

PFS Network team