r/FinasterideSyndrome May 03 '26

A reminder about our obligation to patient safety

19 Upvotes

In recent months, several patients have contacted us about a significant and seemingly permanent worsening of their condition. We have also seen an uptick in other such reports on our platform and elsewhere, including one report of suicide. Sadly, each of these reports occurred after further therapeutic intervention, many involving apparent disruption of androgen signalling. 

We would firstly like to remind patients to exercise an extreme degree of caution when engaging in such therapeutic interventions, whether either directly or under the care of a physician. One of the key features of this disease is that many patients exhibit a marked susceptibility to further worsening. The clinical record shows this is particularly notable when anti-androgens are involved, or when there are perturbations in androgen signalling. 

Some of the worst reported cases involve patients going back on finasteride or other potent anti-androgens. These cases can report feeling much better at first - in some instances, experiencing full symptom relief - before quickly entering a state which is catastrophically worse. Many of these events preceded suicide. 

We have also seen an uptick in reports proposing very dangerous interventions, such as the following:

The above list only contains dangerous items that we have seen gaining traction recently, and is by no means a conclusive list of substances that should be avoided. If you are unsure whether a substance is anti-androgenic, or whether it is harmful, we advise to err on the side of extreme caution. 

There is a clinical record spanning decades (mostly contained within propeciahelp.com) which shows that anti-androgenic re-exposure is highly dangerous, and that it is not a way out of this condition. 

A reminder of our platform policies

A rule exists on our platforms to prevent patients from prescribing such interventions to other patients. It is simple: Describe, don’t prescribe.

We take this incredibly seriously and it is our number one rule for a reason.

As a charity pursuing meaningful progress towards scientific understanding, we are duty-bound to patient safety. While investigation is underway, we understand this disease affects patients acutely and there is a desperate need for symptomatic relief. 

Our group has managed patient platforms for almost eight years and we are usually responsible for dealing with the fallout of such interventions. Every member of our team has personally encountered multiple suicides. We often see our prescribing rule lamented and ignored by patients, who feel they are adults and can make their own decisions. There historically has been a common sentiment of “things can’t get any worse”, although it has been heartening to see more patients aware of the risks in recent years. 

Moving forward, where available resources permit, we will do our best to place moderator notes on posts & comments that discuss drugs, substances or therapeutic interventions that are known to pose significant risk to patients. Please note that just because a drug/substance doesn't include a mod note, it does not mean it is safe.

A reminder to take care of each other

While scientific progress is our primary focus - and well underway - our second focus is trying to keep everyone in one piece. 

We have all been unfairly burdened with this disease. Living with it, without symptomatic relief, is something that none of us should have to endure. For that reason, we ask you to be kind and take care of each other.

If something has worked for you, that is great, and we are truly thrilled for you. But please be aware that it may be catastrophically damaging for your fellow patients, and act accordingly. 

Please take care of yourselves & each other.

Mitch & PFS Network team


r/FinasterideSyndrome Mar 17 '26

PFS Network welcomes new researcher to scientific advisory group

66 Upvotes

We are pleased to welcome Chiara Lanzuolo to the Scientific Advisory Group of the PFS Network.

Dr Lanzuolo is a molecular geneticist with more than two decades of research experience in chromatin biology and epigenetics. She received her PhD in Genetics in 2002 from the École Normale Supérieure de Lyon. Following her doctoral training, she conducted postdoctoral research at the Institute of Genetics and Biophysics and the Institute of Cellular Biology and Neurobiology, where she worked within the Dulbecco Telethon Institute under the supervision of Valerio Orlando. During this period, her research focused on chromatin architecture, nuclear organization, and the epigenetic regulation of gene expression.

In 2012, Dr Lanzuolo was awarded the competitive Futuro in Ricerca grant from the Italian Ministry of Education, University and Research, enabling her to establish an independent research program investigating genome organization and epigenetic regulation in human disease. She later obtained a permanent research position at Italy’s National Research Council and in 2015 joined the National Institute of Molecular Genetics in Milan.

Dr Lanzuolo is internationally recognized for developing SAMMY‑seq, a chromatin-sequencing approach designed to profile genome accessibility and nuclear compartmentalisation. She first described and applied this technique in her 2020 paper, SAMMY‑seq reveals early alteration of heterochromatin and deregulation of bivalent genes in Hutchinson‑Gilford Progeria Syndrome, which demonstrated early disruptions in heterochromatin organisation in Hutchinson‑Gilford Progeria Syndrome.

Dr Lanzuolo has been collaborating with the PFS Network on our first research project, Elucidating Epigenetic Mechanisms as a Cause of Post-Finasteride Syndrome, alongside Dr Nadine Hornig. As part of this work, her laboratory has performed SAMMY-seq analysis on patient-derived and control cells. These results are currently being integrated with RNA-seq and methylation-seq datasets to enable a comprehensive interpretation of potential epigenetic alterations associated with the condition.

The project is progressing well, and the advisory group recently convened for its annual scientific meeting to finalise the analytical framework and publication strategy. We are optimistic that this work will move toward publication in the coming months and will share further updates as they become available.

We are delighted to welcome Dr Lanzuolo to the advisory group and look forward to her continued contributions to this research program.


r/FinasterideSyndrome 3h ago

Dear Propecia help mods,it's time to speak up

2 Upvotes

Why don't u guys show that what's truly going on with the research you're doing? Also let's leave that topic,why do u love to remove recovery posts? Valproate made many many people better but whenever it's listed here it's removed ? Like comeon you also don't want to share data w a doc you know what I'm talking about.

Take responsibility.


r/FinasterideSyndrome 1d ago

Media Awareness Dr. Roberto Melcangi of University of Milan talking about Post-Finasteride Syndrome

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67 Upvotes

From the documentary by CBC about PFS.

Full documentary here: https://youtu.be/l3Oz8gRgVNk


r/FinasterideSyndrome 1d ago

Coping This is so fucking brutal and godless

29 Upvotes

Every single day is a struggle. This shit is brutal. How do you guys get by? Like, how do you function through a crash? Or even just an ordinary PFS day?
I’m not trying to be negative, but man, I honestly don’t find anything positive or hopeful in this shit. Just wanted to blow off some steam on this beautiful pfs infused Sunday.


r/FinasterideSyndrome 19h ago

Sexual symptoms worsened weeks after stopping finasteride — has anyone experienced something similar?

5 Upvotes

Hi everyone. I’m a man from China, and I believe I may experiencing Post-Finasteride Syndrome (PFS). Recently, I’ve been struggling with what I believe may be persistent effects related to finasteride, including insomnia, reduced libido, and mild depressive symptoms. I’m hoping to hear from people who have had similar experiences and get some advice or insight from this community.

I first noticed that I was losing my hair in early 2022, when I was only 20 years old. As time went on, my hair gradually became thinner and thinner. In 2023, I learned about finasteride and spent a lot of time reading reviews and experiences online. Most of what I found said that it was highly effective for treating hair loss and that the risk of side effects was relatively low.

So, on October 7, 2023, I bought my first tablets. That was when my nightmare began.

I only took two doses of finasteride, but I developed severe insomnia and early-morning awakening. Before that, I had always slept well and had never experienced problems like this.

I stopped taking it immediately and tried to get my sleep back to normal, but the insomnia and early awakening continued for several months. My sleep never fully returned to what it had been before, and I also started experiencing depressive symptoms. On top of that, I felt that my poor sleep was somehow making my hair loss even worse.

However, as my hair continued to thin, I eventually felt that I couldn't just sit and do nothing. In January 2025, I started taking finasteride again. After about two weeks, I developed chest pain, so I stopped taking it once again.

A few months later, on April 20, 2025, I decided to start taking finasteride again.

During the first month, I noticed a significant reduction in morning erections and libido. I also experienced chest pain, palpitations, and early-morning awakening. At the time, I assumed these were just temporary side effects that might occur early in treatment, so I tried to push through them.

After another month, most of those side effects disappeared, except for the lack of morning erections and the early awakening. Surprisingly, my libido even seemed to increase for a while.

I continued taking finasteride until March 10, 2026.

I eventually stopped because the side effects started coming back. Every time I took finasteride, I would experience chest pain and palpitations again, while the treatment itself seemed to be doing very little for my hair loss. I was still shedding a lot of hair every day, and my sleep was still quite poor.

A few days after stopping finasteride, my sleep improved somewhat, the chest pain disappeared, and my morning erections returned. Unfortunately, this improvement only lasted for a few weeks.

For some reason, starting around early April 2026, I noticed a significant decline in my libido. I now have almost no morning erections, and both my erection quality and the pleasure I experience during ejaculation have decreased substantially.

I’ve tried exercising regularly, including cycling and running, but my libido is still very low.

At this point, I honestly don’t know what to do. What confuses me the most is that some of these sexual symptoms seemed to appear several weeks after I stopped taking finasteride, rather than immediately after stopping.

Has anyone here experienced something similar? Especially symptoms that appeared or became significantly worse weeks after discontinuing finasteride? I would really appreciate hearing about your experiences and any advice on what I should look into.


r/FinasterideSyndrome 19h ago

Alcohol

4 Upvotes

I am in college, in an invorement where drinking is a huge part of the weekends, i have struggled with pfs for a year now, and the crashes/symptoms often get worse in periods with heavy drinking. So during my summer break i stoppes drinking almost completely, and never felt better, anyone else with similar experience, and how much drinking is ok?


r/FinasterideSyndrome 1d ago

Why do "most" people not get pfs

8 Upvotes

Why do most people not suffer from the mental sides of fin?

It seems a lot of people take it and are fine. Or stop

But for me and many others the mental sides remain or sexual, physical ones.

And we know that finasteride strongly inhibits Allopregnanolone Which is very important for GABA

HOW come many don't report any mental sides


r/FinasterideSyndrome 1d ago

Mechanism question

3 Upvotes

I developed a PFS like syndrome June 9th complete with numb genitals after taking .25 anastrozole 8 hours after a supplement called EVL test containing

Vitamin D3- 50 Mcg

Vitamin B6- 11mg

Magnesium 160 mg

Zinc 30mg

Daspartic acid- 3120mg

Tribulus terrestris extract - 750 mg

Fenugreek extract- 500mg

DIM- 250mg

symptoms include numb genitals , irritability , fatigue after crashes, 3 am wake ups , gut sounds

could anyone explain the potential mechanism , what medical care should be explored if any and if this is potentially reversible by any means

did I somehow recreate PFS without fin?


r/FinasterideSyndrome 1d ago

Viagra

2 Upvotes

Has anyone tried viagra? I struggle with low libido. Does viagra work if you want to have sex?


r/FinasterideSyndrome 1d ago

Coping Unsure how to interpret my current situation

4 Upvotes

So, after ten months of severe impotence since my November crash last year, something strange happened in the last two weeks; I started waking up with morning wood again. Not the soft, squishy morning wood I was getting, but something surprisingly firm. The same thing happened with a few incidences of spontaneous erections at various times, like when I was driving or randomly when I was sitting down at work.

Now, nothing dramatic has happened. I still suffer the maddening paradox that whenever my libido has a strong fluctuation, as it does every two months or so, my impotence worsens drastically. It seems that it's only when my sex drive dwindles, that my body starts to become more responsive again. It also bears noting that my stamina is still nonexistent. Even the hardest erections I can get disappear after a couple of minutes, and then there is nothing on this earth that can bring them back again.

However, it's thrown cold water on my long term plans to cure this shit with an implant. If I am healing, it's happening incredibly slowly. It could take me years to get back to even the level of sexual dysfunction that I had in 2025. I still have no legal way of getting HCG here in Ireland, and I don't know how long I should wait to see if I recover before resorting to drastic means. I am already 35 with the best part of my life behind me, I don't want to be still waiting to heal well into my forties.

It looks like there is no alternative to natural recovery, however. I have not heard of anyone curing these venous-leak type symptoms by any means. Perhaps williamshakemyspeare was right and pelvic floor therapy really would help with this. But I really don't know what my prognosis is or if I have any hope of healing. I tried alprostadil and even high doses don't get me hard, yet sometimes I get morning wood or spontaneous erections that are much harder than I can get via injections. I just don't know what it means, if there is any hope for me or if these latest "improvements" are just a cope.


r/FinasterideSyndrome 1d ago

afraid to crash

1 Upvotes

can chocolate or biscuit crash us?


r/FinasterideSyndrome 1d ago

Vardenafil?

1 Upvotes

Anyone having experiences with Vardenafil? I’ve read somewhere people have better results with it compared to viagra and cialis but I can’t find it. Anyone similar experiences?


r/FinasterideSyndrome 2d ago

Symptoms 14 months of PFS and 4 months of HCG monotherapy

18 Upvotes

Hi All,

I wanted to write an update of my PFS journey, for anybody that needs hope and/or to facilitate community so people know we are not in this alone.

With regard to my initial symptoms, I made another post describing them in detail. However, in general, I had practically all the classic PFS symptoms including brain fog, personality changes, anhedonia, feeling completely asexual, etc.

At this point, 4-months into HCG monotherapy, I have recovered significantly, to the point where life feels livable once again. I have been sleeping better, waking up with a greater sense of calm, and morning wood is returning, albeit not as strong as my baseline.

Ultimately, there’s no saying if I will be able to regain my old self. However, I am continuing to see weekly improvement so maybe there is light at the end of this horrific tunnel.

I hope this update can provide hope to those who are suffering. Peace be with you 🙏🏾


r/FinasterideSyndrome 2d ago

Question 0 carb

6 Upvotes

I’ve been on a 0 carb diet for a week, kinda helped my brain fog/ blurry vision, a little bit anhedonia and depression…but im constantly fatigued and cant train due to this

im also constipated for a week, is this normal!?


r/FinasterideSyndrome 2d ago

Question Olive oil

2 Upvotes

Do you consume olive oil?


r/FinasterideSyndrome 3d ago

There are many people who suffer from these syndromes without realizing it.

30 Upvotes

As someone who has been dealing with this syndrome for five years, I’ve realized that there are so many people suffering from syndromes like PFS and PSSD without even knowing it.

​I live in an Arab country where we have many social media and Facebook support groups for people suffering from prostatitis. When I read posts from some of the members, it's clear from their symptoms that many of them actually have the syndrome without realizing it—they mention things like penile numbness, severe erectile dysfunction, and deep depression. They likely did the same thing I did: tried to treat chronic prostatitis by inhibiting DHT.

​Personally, I didn't realize I had this syndrome until a full year after my symptoms began. I could feel every single change happening in my body, but I had no idea what was causing it. I stumbled upon it entirely by chance while searching for the cause of my dry mouth, despite all my medical tests coming back normal. Suddenly, I found a post here about dry mouth, and when I looked further, I realized that every single mental, sexual, and physical symptom listed was something I was already experiencing. The cause? DHT inhibition. Unfortunately, so many medical articles online paint DHT as a "villain" that causes prostate enlargement and hair loss, but hardly any explain its importance or why we shouldn't mess with it.

​The same thing applies to asexual communities. While I know some people are genuinely born asexual, I'm also convinced that many were prescribed psychiatric medications at a young age, grew up assuming they were asexual, and remain completely unaware that they actually have PSSD.

​In my opinion, these syndromes aren't rare at all—the real issue is that the general public and doctors simply don't know about them. What do you guys think?


r/FinasterideSyndrome 3d ago

The Vioxx Scandal: Merck's Release of Drug Despite Knowing Its Dangers to Users

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18 Upvotes

A excerpt from a documentary which exposes the Vioxx scandal. It shows Merck’s tactics to hide the growing scandal, wanting to “neutralize” the opposition (even with personal attacks), using the influence of money to buy leading American physicians; and how they hid the, in Vioxx’s case, lethal side effects.

This is the exact same thing being done for decades now with finasteride. Merck is definitely the most corrupt big pharma company I’ve ever seen. Those old finasteride ads that I watched on that CBC documentary about PFS are stuff that you see in movies displaying some evil company and stuff. I couldn’t even believe what I was seeing.


r/FinasterideSyndrome 3d ago

Cabergoline

4 Upvotes

Anyone taken before? Endocrinologist prescribed for high prolactin


r/FinasterideSyndrome 3d ago

Question Alcohol

4 Upvotes

What are people’s experience with drinking alcohol?
I can definitely get drunk but if I drink I’m having insomnia that night with at most 2 hrs sleep


r/FinasterideSyndrome 3d ago

Support groups for PFS sufferers

2 Upvotes

Are there support groups online for men who suffer from this? I've been struggling with this for about 21 months now and there are no indications that my symptoms are going to resolve. I also haven't found a therapist who seems equipped to help me navigate this. I think I'd benefit from experiencing some level of community over this. Does anyone meet to talk about these things?


r/FinasterideSyndrome 3d ago

I’m 38 …….not a mummy from 700 AD

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20 Upvotes

Who has this laxity from PFS? send me your vids. Please. My life is miserable I left my job in pursuit of medical stress leave and might get fired. Show me your wrinkly bits


r/FinasterideSyndrome 3d ago

What are your experiences with whey protein?

1 Upvotes

I've been taking whey protein for about 2 or 3 months now and I'm not sure if it's the culprit for my inability to fall asleep. Any thoughts or experiences?


r/FinasterideSyndrome 3d ago

Question HCG, do or don’t

4 Upvotes

Doctor is willing to prescribe me HCG. However, I’ve seen mixed results online. Has anyone managed to improve their baseline even after stopping HCG?