Where are firsthand reports of finasteride’s adverse effects and post-finasteride syndrome?

This site has compiled men’s reports of experiences on and off finasteride in a series called Firsthand experiences. This post lists online sources where such stories can be found.

We must also ask: Are firsthand reports valid? Can they be considered evidence in any sense? For a discussion of these questions, read Weighing firsthand reports of experiences with finasteride.

Sources of firsthand experiences

Now we’ll turn to where these stories can be found. The main categories of sources are:

  • hair loss forums on reddit and elsewhere
  • PropeciaHelp forum
  • social platforms: Youtube and Twitter
  • Medium
  • personal websites
  • podcasts
  • pharmacovigilance databases

Hair loss forums

Reddit
HairLossTalk
Baldtruthtalk

This is a discussion board for the call-in show The Bald Truth. See also the episode on YouTube: “Post Finasteride Syndrom [sic] (PFS) – A Physician’s Personal Experience

PropeciaHelp forum

Background on PropeciaHelp is here (see History at the bottom of the page). This online community started as a Yahoo group in 2003; a web forum was launched in 2006. The forum was relaunched in 2018 with active moderation. According to site statistics, as of June 2021 there have been nearly 15,000 posts and over 300,000 comments to the board.

The forum can be browsed by Latest posts, Category or Top posts.

The site has sponsored PFS Network which in 2021 published several videos of people reporting their experience of post-finasteride syndrome.

Social platforms

YouTube
Twitter

Medium

My Life Has Been Ruined by an Anti-Baldness Drug, 14 Sep 2018

Podcast

PFS Global Support podcast. 44 episodes were published between 2013 and 2015. From the description: “PFS Global Support, hosted by Dr. Nader Jawad, is here to provide a regular gathering place where victims and their loved ones can share information and offer mutual support.”

Pharmacovigilance databases

The two major databases are FDA’s Federal Adverse Event Reporting System (FAERS) and WHO VigiBase. Each case has structured data (such as adverse events from a standardized list) and narrative descriptions. Structured data is publicly available. Narrative descriptions from FDA FAERS may be requested via FOIA request sent to FDA.

Finasteride Info has obtained some case reports via FOIA request. Selected narrative descriptions from those cases are in these posts.

Suggestions

If you know of other sources of firsthand reports, please send them to finasteride.research [at] fastmail.com