The most frequently asked questions by new PFS patients
If you’ve just stopped taking finasteride and are experiencing persistent side effects, it’s likely you have many questions.
Post-Finasteride Syndrome affects every patient 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.
I’ve just quit finasteride and I’m still experiencing side effects, how do I know if I have 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 I’m still experiencing symptoms, what should I do now?
It’s normal to feel panicked, upset or hopeless.
In the short-term, focus on self-care by minimising stress around you. Try to find routines and activities that help you personally. For example, not all patients respond positively to exercise. Be practical about your work and life situation. Try not to think too far ahead and catastrophise. Familiarise yourself with the scientific literature.
What should I avoid if I’m 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 situation, do not take 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.
I only took finasteride for a very short time, does that mean it’s more likely I’ll recover?
Post-Finasteride Syndrome is not dose-dependent.
Counter-intuitively, some of the most severe cases occur after minimal exposure, sometimes as little as one dose.
This has been supported by patient self-reports and regulatory data.
How do I 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.
What’s there to be hopeful about then?
It is natural to feel hopeless about research timelines. We are obligated to remind patients 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 patients 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 in their fields. This occurred largely through the contributions of individual patients and a small number of private donors, usually family members.
You and your family can help us 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 patients that we cannot provide guarantees of when a treatment or cure for Post-Finasteride Syndrome will be available.
The first step in finding a treatment is mechanistic understanding, meaning an understanding of what is causing the symptoms you’re 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?
Contributing to scientific research, where possible, is the first step in helping us find a treatment. But for future studies we don’t only need you involved: We need your family.
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 over 56 times larger than the average amount contributed by patients.
We urgently need the support of your family to help us find a treatment.
Speaking with your family and loved ones about PFS can be terrifying. You might feel you won’t be believed or supported. To help, we’ve put together a page for families, exactly for this purpose.
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 get your family involved. Ask for a monthly matching donation, or a bigger once-off donation.
With world-leading scientists and the support of your family, we can find a treatment.
Can I participate in studies?
Yes, absolutely. If you are a patient affected by PFS, we strongly encourage you to apply for ongoing research.
I read about Baylor’s research but I’m skeptical. I read somewhere PFS is caused by…
To date, Baylor’s findings offer the best explanation for what is occurring in PFS, as they take into account a complete picture of all the symptoms reported by patients, and several key features of the disease such as “the crash”. Patients should be sceptical of explanations which do not do this or are overly simplistic. We wrote about this in a recent blog post.
It is entirely ok to not understand the scientific concepts involved in PFS, or the complex explanations provided by recent case-controlled studies.
The majority of patients do not have backgrounds in medicine or scientific research, and the concepts involved in PFS are usually only understood by experts. Many people don’t have the knowledge or skills to build a skyscraper, and instead defer to engineers and architects. The same principles should apply to understanding PFS.