Propeciahelp is a Post-Finasteride Syndrome patient organisation. PFS describes serious mental, physical and sexual side effects that persist – or more commonly deleteriously progress – after discontinuation of Finasteride (Propecia, Proscar, generics), a selective 5-alpha reductase type 2 enzyme inhibitor, frequently marketed as androgen deprivation therapy for treatment for male pattern baldness and benign prostatic hyperplasia.
Please visit PFSNetwork.org for information about PFS
5 Key Objectives
Provide a Community
Propeciahelp is the largest and longest running PFS patient community. The forum is noted in medical publications as a source of clinical information. PFSNetwork provide a managed community for patients to connect, share experiences, and contribute to the vast patient record maintained on the forum. No content submitted by members to the discussion forum is endorsed by our organisation.
Establish Clinical Reality of the Post-Finasteride Syndrome
Scientists requesting funding for specialised investigations should demonstrate an adequate appreciation of the clinical problem. The broad multisystem nature of PFS and its novel characteristics remain poorly appreciated. The organising members of propeciahelp have unequalled familiarity with the condition, having operated the site for over a decade and carefully reviewed the entirety of our patient records in the design of our Post-Drug Syndrome Survey. Through this unprecedented patient effort, we have collected the largest standardised data set in existence regarding this clinical problem. We will build on this work to prioritise acknowledgement of the clinical profile of Post-Finasteride Syndrome.
Increase Visibility of a Public Health Issue
Propeciahelp is critical to the public visibility of the rare disease termed “Post-Finasteride Syndrome”. In the absence of appropriate clinical acknowledgement, we work towards informing clinicians and the public about the condition and the unpredictable risk to young men of antiandrogenic endocrine disruption. Severe phenotypes can follow as little as one dose, and consent to this risk is not currently obtained. in 2021, we launched PFSNetwork.org to spread awareness of this devastating problem.
Achieve Practical Scientific Investigation
Our objective is to achieve etiological understanding of Post-Finasteride Syndrome through appropriate genetic and molecular level investigation, and uncover the crucial predisposing factors. We will do our utmost to involve specialists who we consider to be at the forefront of demonstrably relevant fields with a proven ability in interpretation of such data. We will endeavour to network with centres with research pipelines capable of achieving the practical analysis that will lay the groundwork for eventual therapies.
Consider A Bigger Picture
Patients are suffering a heterogeneous syndrome extremely similar to Post-Finasteride Syndrome following exposure to a range of products that are considered ordinarily safe. These are all profound antiandrogenic endocrine disruptors. In addition to the coincidence in mechanistic endpoints, our Post-Drug Syndrome Survey data illustrates a remarkable clinical overlap in the conditions. Pending molecular level findings in PFS patients, we will seek to organise focused and cost-effective confirmational research projects in Post-Serotonergic drug/Post-Accutane/Post-Saw Palmetto patients to evaluate the possibility of a single syndrome following antiandrogenic endocrine disruption in a subset of consumers. Further evidence of a single pathomechanistic post-androgen deprivation syndrome would elevate consideration of the problem to that of an urgent public health issue.
Please contact us at firstname.lastname@example.org if you are a researcher or journalist interested in PFS.
Propeciahelp Discussion forum
The propeciahelp.com discussion forum exists as a place of support and connection for men suffering from Post-Finasteride Syndrome and as a place to share and record their experiences. Membership of the discussion forum is NOT for those considering use of or using finasteride. Membership is restricted to past users of Finasteride (or other antiandrogenic endocrine disrupting drug) who are experiencing persistent side effects that have not resolved in the months or years after cessation. The forum is actively managed and members agree to abide by the community rules and our terms of service.
New patients and non-patient visitors should understand that the membership of the site is comprised of patients in significantly variable conditions doing their best to navigate an astonishing situation and trying to make sense of what is happening to them to the best of their abilities. Due to a longstanding failure at the clinical level and a dearth of primary research into the disease, this is often in the complete absence of appropriate clinical support.
The staff of propeciahelp.com emphatically assert that discussions taking place on this or any PFS patient forum should not be considered medical advice. While controlled scientific study has confirmed relevant clinical findings in PFS patients, the molecular level drivers of the condition are yet to be elucidated and PFS is currently without a safe or effective therapeutic approach. Any posts containing assertions as to the etiology of PFS or suggesting therapies are the thoughts of the anonymous individual and are not supported or endorsed by the staff of propeciahelp.
Due to a consistent influx of patients suffering a remarkably similar clinical syndrome following the use of other anti-androgenic endocrine disruptive substances, we now offer membership to patients experiencing the persistent symptom profile of PFS following the use of the following drugs or substances:
- Dutasteride (Avodart, Duodart, generics)
- Isotretinoin (Accutane, Roaccutane, generics)
- Antidepressant (various including serotonergic medications)
- Saw Palmetto extract
- Phenolic compound supplement (including Milk Thistle, Resveratrol, Rutin, Genistein)
- Minoxidil (Rogaine, generics)
- Androgen receptor antagonist (including Cyprotone acetate, Spironolactone, Bicalutamide, Enzalutamide, Abiraterone acetate, RU 58841)
- GnRH analogue such as Leuprorelin (Lupron, Eligard), Goserelin (Zoladex) or Triptorelin (Decapeptyl, Gonapeptyl)
The support group was originally formed in 2003 on Yahoo Groups. As membership for the Yahoo group grew to 1000+ people over 3 years, it was decided that a newer, easier-to-use forum was needed to help categorize and track the wealth of information collected. In 2006, www.propeciahelp.com was created. The original Yahoo group is no longer available. In April 2010, propeciahelp.com was updated to include a content management system (website). In May 2018, the site was relaunched with active community management, modern software and functionality. Read more about the 2018 relaunch.
The site passed over 5000 registered users in 2019. In a major software development undertaking, a clinical survey and accompanying analytics system was added to the core functionality of the community platform in 2019, allowing us to clinically characterise our membership through 2000+ data points per patient. Additional technical implementations allow this data to be visualised in real time. To our knowledge, propeciahelp.com is the first patient organisation in the world to develop and implement such capabilities.
To build on this work and achieve urgently needed awareness and understanding of PFS, the organising members launched PFSNetwork.org on Rare Disease Day 2021. This site provides an outreach-focused source of information, as well as patient video testimonies.