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
- user reviews on drug information sites
- personal websites
- pharmacovigilance databases
Hair loss forums
- r/tressless has over 80,000 members as of June 2021. Selected posts and categories:
- I am torn about finasteride
- Finasteride affected my sexual life and i wasn’t even aware
- Topic (called “flair” in Reddit): Finasteride/Dutasteride
- Reddit advanced search: finasteride and (side effects OR syndrome OR sexual OR erectile OR sex)
- Finasteride has destroyed my life
- 14 Years On finasteride, Side-effects Slowly Creeping Up
- Post Finasteride Syndrome Sufferer. Contemplating Suicide
- 9 Years on 1 mg Finasteride
- Has anyone ever 100% recovered from finasteride?
- Finasteride Sex Drive Issues (ed/libido)
- Category: Antiandrogens – Propecia, Dutasteride, etc.
- Search for “finasteride side effects” | Search for “finasteride syndrome”
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” (transcript here).
- Spencer Kobren Discusses Post Finasteride Syndrome 5/5/12
- Has anyone heard of stopping and restarting finasteride, inducing persistent sides?
- Long thread: [finasteride] Bijwerkingen [Side effects]. In Dutch.
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 site has sponsored PFS Network which in 2021 published several videos of people reporting their experience of post-finasteride syndrome.
- Post Finasteride Experience – 2020. A man reports severe mental side effects followed by a recovery
- PropeciaHelp launched the PFS Network channel with videos of men recounting their experience of post-finasteride syndrome
- The Bald Truth Ep. 137 – Post Finasteride Syndrom (PFS) – A Physician’s Personal Experience – 2015. At time 01:28:45, a man who says he is a physician in Baltimore calls in to describe persistent adverse effects he experienced after stopping finasteride. A transcript of the call is here: Firsthand experiences of finasteride – Volume VIII: Bald Truth edition
- It has drastically altered my life
- It has had a devastating effect on my life
- My life is in ruin
- Completely destroyed me
User reviews on drug information sites
Ask a Patient
My Life Has Been Ruined by an Anti-Baldness Drug, 14 Sep 2018
Finasteride Completely Destroyed My Life, 17 Jun 2021
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.”
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.
If you know of other sources of firsthand reports, please send them to finasteride.research [at] fastmail.com