Post-Finasteride Syndrome: Common Questions & Answers

Post-Finasteride Syndrome is a poorly understood condition, and there is a mountain of conflicting information about the disease online.

For men considering the drug for hair-loss, or those experiencing persistent side effects after taking finasteride, it’s hard to know what to trust. What is Post-Finasteride Syndrome? Does the condition even exist? How common is it? Is it likely that I’ll get Post-Finasteride Syndrome after a short period of using finasteride? How do I treat Post-Finasteride Syndrome?

Drawing on scientific literature, regulatory data and patient reports, we’ve put together this guide to help answer the six most commonly asked questions about Post-Finasteride Syndrome.

What is Post-Finasteride Syndrome?

Men reporting Post-Finasteride Syndrome experience side effects that persist after stopping the hair loss drug finasteride. 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.

Is Post-Finasteride Syndrome real?

Case-controlled scientific studies have indicated significant changes occur in a subset of men after stopping finasteride. These studies, which you can find on our science page, have discovered a multitude of problems in some men who previously took the drug. These include:

Significantly altered gene expression.
Penile vascular abnormalities.
Significantly altered levels of neurosteroids.
Altered methylation pattern of the SRD5A2 gene in the cerebrospinal fluid.
Androgen Receptor (AR) Gene (CAG)n and (GGN)n Length Polymorphisms.
Disproportionate rates of sexual dysfunction and depression.

Reviews of regulatory data from FAERS, the FDA’s adverse event reporting system, also indicate strong signals of persistent sexual dysfunction, symptoms more frequently resulting in disability, and disproportional reporting of suicidal ideation. Multiple regulators have issued warnings about side effects which can persist after discontinuation of the drug.

The NIH updated their website to include information about PFS in 2015. Patients and their families have also reported persistent symptoms they have experienced after taking finasteride.

There are some clinicians who have expressed skepticism about the existence of Post-Finasteride Syndrome. Some have published articles suggesting PFS is a delusional disorder caused by mass hysteria. These clinicians are predominantly dermatologists or hair loss doctors who claim they have largely not observed the condition in their patients. Whether that is true or not, several counterpoints deserve mentioning:

These clinicians most frequently prescribe the drug.
Their anecdotal observations are not equivalent to the findings of case-controlled studies.
There are multiple problems with Dr Ralph Trueb’s assertion PFS is a delusional disorder, which have been addressed here.

So, is Post-Finasteride Syndrome real?

Although a definitive causal link is yet to be established, the body of scientific literature, regulatory data and patient reports strongly suggests some men are experiencing serious and persistent health problems after taking finasteride.

How common is Post-Finasteride Syndrome?

If Post-Finasteride Syndrome is real, how common is it? If I take finasteride, is there a strong chance I’ll develop PFS?

One study estimated 1.4% of men who take finasteride experience persistent sexual dysfunction. This is only one symptomatic domain, however, and the study only evaluated a single source of medical records at Northwestern Medicine. There have also been over 30,000 adverse event reports for finasteride globally.

An investigative report by Reuters also discovered evidence of persistent sexual dysfunction in 5-year clinical trials for finasteride involving 323 men. The report found that at least 1 man, and potentially as many as 7, developed sexual dysfunction which persisted after stopping the drug. This estimates a rate of persistent side effects between 0.3% - 2.1%.

It is impossible to say how common Post-Finasteride Syndrome is. The published data is insufficient as men reporting symptoms to clinicians are often met with outward skepticism and their cases are improperly recorded or misdiagnosed. It is common for clinicians to inappropriately report adverse events to regulators.

Only 33% of FAERS reports for finasteride were submitted by clinicians, well below the mean for drug adverse event reports submitted by healthcare professionals. Accurate reporting and further research are urgent priorities to establish how common Post-Finasteride Syndrome is.

If the condition is rare, is there anyway to know if I’m at risk?

No, there isn’t. Reviews of regulatory data have concluded PFS is indiscriminate. It can develop in anyone regardless of dose, and in previously healthy men with no pre-existing psychiatric diagnosis, sexual dysfunction or physical problems.

One man spoke about the potential risks of developing Post-Finasteride Syndrome even after brief exposure to finasteride on a recent podcast series.

“It can happen to your brother, your dad, husband, friend. There is no way of knowing how you’re going to react when you take this drug. It can completely ruin your life, overnight. I took one pill, two and a half years ago, and nothing has got better.”
PFS patient, Damon Knighten

What are the symptoms of Post-Finasteride Syndrome?

Despite being described in popular media as “sexual dysfunction and depression”, the symptoms of PFS can be vast and severe.

PFS symptoms exist across three key symptomatic domains: physical, neurological and sexual. Physical symptoms can include muscle atrophy, wastage, frequent urination and head pressure.

Neurological symptoms can include insomnia, derealisation, memory impairment and suicidal ideation.

Sexual symptoms can include penile atrophy, shrinkage, low or no libido and erectile dysfunction.

These symptoms were also observed in men studied by Baylor College of Medicine.

The study found significant deregulation of gene expression in biological pathways relevant to these symptoms. For example, men in the study reported musculoskeletal complaints including muscle atrophy, changes to their skin and joint pain. Researchers found multiple clusters of genes responsible for skin and muscle development were not functioning correctly.

Regulatory bodies, such as New Zealand’s MedSafe, also provide an overview of reported symptoms on their websites.

Patient self-reports indicate high variability in symptoms experienced and their severity. Some patients experience a handful of mild symptoms in one domain, while others experience severe symptoms across multiple domains.

How long do I have to take finasteride to get Post-Finasteride Syndrome? Can I reduce my dose to avoid PFS?

Post-Finasteride Syndrome is not dose-dependent. Those who take only one dose are exposed to the same risk as those who take the drug for years. This has been supported by men surveyed in scientific study and regulatory data.

Some of the most severe cases occurred after minimal exposure. This includes Daniel Stewart, a Professor of Criminology who took his own life after only nine doses. It is unknown why such brief exposure can cause such considerable damage.

If you are considering the drug, be aware that reducing your dose will not decrease the possibility of developing PFS, or even on-drug side effects. Scientific study shows maximum DHT suppression is achieved after a single 1mg dose of finasteride and DHT is significantly reduced at all doses between 0.04mg and 100mg. Risk of developing PFS cannot be mitigated by reducing your dose, using topical finasteride or other milder DHT inhibitors like Saw Palmetto.

Is there a treatment for Post-Finasteride Syndrome?

There is currently no effective treatment for Post-Finasteride Syndrome.

Baylor’s findings of deregulated gene expression indicate a complex disease which requires further scientific study before effective treatments can be identified. Such studies are underway and you can learn more about and support them here.

Many men report an improvement in symptoms over time to varying degrees. If you are experiencing PFS, however, be aware that men have reported becoming worse, sometimes permanently, as a result of hormone replacement therapies. Men experiencing PFS should avoid substances or foods known to be anti-androgenic, as further exposure to an androgen-deprived state can lead to further worsening of symptoms. In particular, many patients have reported becoming worse after use of SSRI or SNRI anti-depressants, two drug-classes which have been shown to have an anti-androgenic effect.

Avoid misinformation commonly found on YouTube and elsewhere with claims of miracle cures or treatments. These treatments have been found to be overwhelmingly ineffective and sometimes dangerous.

If you are experiencing Post-Finasteride Syndrome, the following may be helpful for your condition:

Give your condition time to improve. Many patients report improvements over time to varying degrees.
Speak to your family, friends and clinician about your condition. Use our helpful resources to navigate your conversations.
Avoid stress. Eliminate as many stressors from your life as possible.
Eat a basic, healthy diet where possible, and avoid anti-androgenic foods.
Some patients can tolerate more intense exercise and find it helpful, others may find benefit from very light exercise, or none at all. Find what works best for you.
Find support from other patients on the propeciahelp forum.
Support research and get involved with patient advocacy. More scientific study is urgently needed.

We are not licensed professionals and this should not be considered medical advice.

Is Post-Finasteride Syndrome Permanent?

While many patients experience improvements over time to varying degrees, Post-Finasteride Syndrome is usually permanent. Some patients have reported complete recovery over time but this is not representative of the overall patient experience.

If you are considering finasteride, it is urgent you understand this reality. Despite suggestions PFS is treatable through hormone therapy or lifestyle changes, that has proven to be overwhelmingly false.

For men experiencing the disease, please check out our latest research initiatives and support them where possible. PFS Network is working with world-leading researchers with appropriate expertise to identify the mechanisms involved and move towards targeted and effective therapeutic treatments.

Key takeaways

According to scientific literature, regulatory data and patient self reports, Post-Finasteride Syndrome is a serious clinical problem consisting of physical, neurological and sexual symptoms which occur in a subset of men.
The condition appears to be rare, but the exact prevalence is unknown.
Anyone can develop Post-Finasteride Syndrome, regardless of prior health, dose amount, or treatment duration.
There are currently no treatments or cures, but many patients experience improvement over time to varying degrees.
Accurate reporting and appropriate research are urgent priorities to better understand Post-Finasteride Syndrome.

Sources

The 6 most commonly asked questions about Post-Finasteride Syndrome