The most frequently asked questions by PFS families
If your loved one has just stopped taking finasteride and is experiencing persistent side effects, it’s likely you have many questions.
Post-Finasteride Syndrome affects every patient and their family differently. There are no standards when it comes to symptoms, severity and treatment.
Drawing upon 15 years of patient self-reports and scientific literature, we’ve created this guide to help answer the most frequently asked questions from new patients and families.
Please note the information in this guide should not be considered medical advice. We can only provide you answers based on the best available information.
What is PFS?
Men reporting Post-Finasteride Syndrome experience side effects that persist after stopping finasteride or other 5-alpha reductase inhibitors.
These symptoms occur in three categories: sexual, physical and neurological. In many cases, these symptoms become worse after stopping finasteride, and often new symptoms appear that were not present while taking the drug.
On-drug side effects are not Post-Finasteride Syndrome.
My loved one just quit finasteride and is still experiencing side effects, how do I know if it’s PFS?
Although drug manufacturers advise side effects should resolve in 7-14 days, patient self-reports indicate this can take longer for some. Given the lack of scientific understanding about Post-Finasteride Syndrome, it is virtually impossible to determine exactly when someone’s persistent side effects should be considered persistent rather than on-drug side effects.
Self-reports indicate that it can take up to 3 months for on-drug side effects to resolve. After that, the symptoms can be considered persistent.
It’s been 3 months and they are still experiencing symptoms, what should I do now?
It’s normal that you and your loved one will feel panicked, upset or hopeless.
In the short-term, focus on self-care by minimising stress around your loved one. Try to find routines and activities that help them personally. For example, not all patients respond positively to exercise. Be practical about their work and life situation. Try not to think too far ahead and catastrophise. Familiarise yourself with the scientific literature.
This all sounds a bit unbelievable. I’ve read that PFS is a delusional disorder. Is that true?
There is content online which suggests that Post-Finasteride Syndrome either doesn't exist at all, or is a delusional disorder caused by stimulated reporting about finasteride. Some of this content has even been published in medical journals. There are many articles and videos from hair-loss doctors, dermatologists, hair-loss companies and drug manufacturers.
Although a causal link between the drug and the disease is still being established, case-controlled scientific studies have indicated significant biological changes occur in a subset of men after stopping finasteride. This includes findings from Baylor College of Medicine, University of Milan and University of Udine. Reviews of regulatory data also indicate strong signals of persistent multi-systemic health problems, and disproportional reporting of suicidal ideation. Thousands of men have reported persistent harm dating back to the early 2000's, long before there was media attention on PFS.
Although rare, Post-Finasteride Syndrome is absolutely real.
An article which suggests PFS is a delusional disorder was authored by a doctor specialising in hair loss who has prescribed finasteride for 20 years. He declared no financial conflict of interest when publishing the article. The report suggested a Swiss documentary caused "mass hysteria" which led to the development of a psychosomatic condition in a patient he was treating.
There are problems with this article, as it was published in a low-quality journal, was based on a single case report, and that case had no prior diagnosed psychiatric or depressive history. The author says the man's condition was caused by "mass hysteria", which he defines as "many people believing obviously false and distressing things based purely on hearsay". Case-controlled scientific findings are not "hearsay" and therefore it is inaccurate to say the man's problems resulted from "mass hysteria".
Before forming an opinion on the veracity of your loved one’s reported symptoms based on articles by hair-loss doctors and drug manufacturers, please familiarise yourself with case-controlled scientific findings about PFS.
If finasteride is causing these problems, why is it on the market?
It is difficult to fathom that such a commonly prescribed drug could be causing such profound damage and that it remains on the market so many years later.
Finasteride is a commonly-prescribed drug that underpins a multi-billion dollar industry. It is the only drug that effectively slows the progression of hair loss, and therefore is widely prescribed by hair loss doctors, dermatologists and hair loss companies. These are often the people most opposed to the existence of PFS, or who suggest it is a delusional disorder.
There are inherent conflicts of interest for some presenting safety information about finasteride and the possibility of developing PFS.
Many who suggest PFS is a delusional disorder often refer to two key pieces of evidence to suggest finasteride is safe: The drug's clinical trials, and its warning label.
As discovered by investigative reporters at Reuters, there was evidence of persistent sexual dysfunction reported by men in finasteride's clinical trials. This occurred in at least one man, and potentially as many as seven, in a five year clinical trial involving 323 men.
Drug manufacturer Merck was found to have inappropriately reported this data to drug regulators, made deceptive changes to its warning label to obscure it and misled consumers about the drug's safety. Despite Reuters' investigation and results from case-controlled studies, this warning label remains largely the same today.
How do we treat Post-Finasteride Syndrome?
There are currently no safe or reliable treatments for Post-Finasteride Syndrome. While some patients have attributed improvements to various substances or lifestyle changes, these are not notably consistent over many years.
It is natural in this situation to seek therapeutic relief.
But before you do, please be aware of the broader situation.
Two decades of patient trial & error has not yielded a safe or reliable treatment. It is extremely unlikely your attempts will be different from thousands who came before.
Some patients have become significantly and sometimes permanently worse as a result of therapeutic attempts. If you think your situation cannot get any worse, it absolutely can.
The opportunity cost of a patient community only focused on therapeutic relief is scientific progress. There has been a stark lack of progress in the last two decades, paradoxically meaning a safe and reliable treatment is no closer than it was when trial & error began.
Some patients experience improvement over time as their symptoms stabilise. This typically occurs anywhere between 6-18 months after onset of symptoms. While your situation may feel hopeless, please be patient.
I can’t stand seeing my loved one like this. What can I do to help them?
Many families find it extremely difficult to accept that there is no way to relieve the pain their loved one is experiencing.
As basic as it sounds, the best thing you can do is accept their situation, believe them and emotionally support them in a way they feel comfortable with. You will probably feel helpless and defeated, but please remember they are likely feeling worse.
If you want to get involved in helping us find a treatment, there are simple and meaningful ways you can help.
What’s there to be hopeful about then?
It is natural to feel hopeless about research timelines. We are obligated to remind you that scientific progress takes time. But also remember two key points:
Scientific discovery is absolutely essential. A safe and reliable treatment is evidently not being delivered by patient trial & error. If we do not support scientific progress, it simply will not happen.
New scientific discoveries happen all the time.
Feeling hopeless often results in a mode of short-term behaviour only focused on therapeutic relief. While we strongly encourage your loved one to avoid self-experimentation for safety reasons, please remember it is possible to seek therapeutic relief while also supporting scientific progress.
The situation is not hopeless, in fact far from it.
In recent years there has been more progress towards an effective treatment than ever before. A focus on a data-driven, scientific approach has enabled this community to fund two landmark scientific studies that involve some of the world’s best researchers. This has remarkably occurred largely through the contributions of individual patients and a small number of private donors, usually family members.
With your support, and the support of more families, we can find a treatment for Post-Finasteride Syndrome.
Who is involved in scientific research?
The PFS patient community is extremely fortunate to have a group of highly-accomplished researchers working to understand the disease and identify therapeutic treatments.
Two studies underway are led by Dr Nadine Hornig and Dr Alfonso Urbanucci, accomplished molecular biologists who have both been published in one of the world’s leading scientific journals, Nature. Both are experts on the androgen receptor, which has been shown to be overexpressed in PFS patient tissue by two separate studies.
PFS Network works with a large group of mutlidisciplinary researchers and clinicians, including Professor Johanna Schleutker, Prof. Janna Saarela, Prof. Mohit Khera and Prof. Per Thorsby.
When will we have a treatment?
We are obligated to tell you that we cannot provide guarantees of when a treatment or cure for Post-Finasteride Syndrome will be available. If somebody tells you they are aiming for a cure within a particular timeframe, please approach those claims with skepticism.
The first step in finding a treatment is mechanistic understanding, meaning an understanding of what is causing the symptoms your loved one is experiencing. That is one timeline we can influence. Phase I studies are underway and when they deliver actionable insights, we need to be ready to fund new studies without delay.
Any delays caused by funding could set progress back years.
How can I help find a treatment?
Current studies have been remarkably funded largely by individual patients and a small handful of families.
Only 1 in every 124 donations we receive comes from the families of PFS patients. This pales in comparison to other rare disease communities.
The average amount contributed by loved ones is 56 times larger than the average amount contributed by patients.
We urgently need your support to help us find a treatment.
Setting up a monthly recurring donation to support your loved one is the easiest way to help us find a treatment. If you are financially able, we would love to speak with you about contributing a more significant amount to help us secure future research projects and accelerate our timeline to a treatment.
Can we really make a difference? Won’t studies cost millions?
Due to a close working relationship with researchers, our Phase I studies did not cost millions.
It is entirely possible for our community to make a real difference in finding a treatment. Take a look at our fundraising efforts from 2023 and how different it could have been with the support of families.
The easiest, most attainable way to help us find a treatment is to simply get started.
With world-leading scientists and your suport, we can find a treatment.
What should my loved one avoid if they’re experiencing PFS?
Some PFS patients have exhibited an unusual and marked sensitivity to further substances with anti-androgenic effects, and in some cases have made their condition permanently worse in attempts at alleviating their existing symptoms. We are obligated to make patients aware as this has preceded patient suicide.
Scientists investigating Post-Finasteride Syndrome have seen patients worsened by self-driven therapeutic attempts, and Professor Roberto Cosimo Melcangi has commented that “DIY” forum treatments risk doing further damage.
It is important to note that SSRI and SNRI anti-depressants are frequently prescribed to PFS patients as frontline treatments for neurological symptoms.
Research has found these drugs have anti-androgenic effects, and many patients have reported significant and sometimes permanent worsening after use.
Please, no matter how bad your loved one’s situation, do not provide them an anti-depressant.
While we cannot provide a list of all anti-androgenic substances or foods, it’s best to be cautious. Known anti-androgenic foods include soy beans, mushrooms, fatty fish like salmon and tuna, licorice and green tea.