Post-Finasteride Syndrome: Answering Your Questions and Unravelling the Myths

Post-finasteride syndrome (PFS) happens after stopping the drug finasteride, usually taken to treat male pattern baldness or an enlarged prostate. Men can experience long-term sexual, emotional, and physical side effects as a result.

Despite men reporting the same side effects after stopping finasteride, PFS isn't formally recognised by the whole medical community. This can make diagnosis difficult.

PFS is usually diagnosed based on certain symptoms, although other tests may be needed to rule out other medical issues. Treatment focuses on dealing with these symptoms rather than their cause, which remains unclear.

In this article, we'll talk about this condition, the symptoms, treatment, and what to do if you're worried about post-finasteride syndrome.

What Is Post-Finasteride Syndrome (PFS) and Is It Real?

PFS is defined as “enduring sexual dysfunction that persists after stopping treatment with a 5 alpha-reductase inhibitor (finasteride, dutasteride)” [1]. In other words, sexual issues that continue after you stop taking finasteride, or other drugs in the same class.

There’s some disagreement about whether PFS should actually be a condition at all. Many medical professionals deny the condition exists, and research is inconclusive.

Some studies have found that the number of men experiencing PFS symptoms is similar to the number with sexual dysfunction who’ve never taken finasteride [2]. They think the symptoms might be a coincidence.

However, the BNF (the official UK list of medications and their side effects) shows sexual dysfunction as a side effect of finasteride. As of 2012, the PFS Foundation was created to spread awareness of the condition. Research around PFS continues to grow.

What Causes PFS?

Post-finasteride syndrome is related to the treatment of male pattern hair loss or benign prostatic hyperplasia using finasteride (or other medications in the same class). Despite clinical trials, we still don't exactly what causes the condition, but there are some theories.

What Is Finasteride?

Post-finasteride syndrome is, as you might have guessed, caused by finasteride. Or, more accurately, by stopping taking finasteride.

Finasteride inhibits the production of the hormone dihydrotestosterone (DHT) in the body. DHT is a form of testosterone that's responsible for male pattern baldness (androgenetic alopecia). High DHT can decrease hair growth and cause non-cancerous growth of the prostate (benign prostatic hyperplasia).

By blocking DHT, finasteride can reduce prostate growth, prevent further hair loss, and improve hair growth by reactivating hair follicles.

Oral finasteride is used for both conditions, whilst topical finasteride is applied to the scalp to treat hair loss.

How Does Finasteride Cause Post-Finasteride Syndrome?

Finasteride is a successful treatment for male androgenetic alopecia in most male patients. It's very rare that men report ongoing sexual symptoms.

Despite continuing research, we still don't know exactly what causes post-finasteride syndrome.

So what makes some men suffer from PFS, whilst most continue taking finasteride without any issues?

One theory is that men experiencing persistent sexual side effects, depressive symptoms, and other adverse effects are more likely to have changed steroid levels in their bodies, as shown in a clinical trial [3].

Another study suggests that men with existing mental illness are at an increased risk of emotional consequences with finasteride use [4]. The authors of this study even suggest that the symptoms of post-finasteride syndrome were an induced delusional disorder in one man – that the symptoms were imagined.

More research is needed in this area to explore what causes the rare adverse events related to finasteride.

What Are the Symptoms of PFS?

Symptoms can be grouped into three categories: sexual side effects, psychological disorders, and physical symptoms [5].

Sexual Side Effects

• A reduction or loss of sexual arousal or desire (also known as sexual anhedonia)

• Erectile dysfunction

• Reduced genital and orgasmic sensation

• Ejaculation disorder, including reduced semen volume

Physical Symptoms

• Swelling in your hands or feet

• Breast enlargement or tenderness

• Neurological symptoms like dizziness, headaches, or weakness

• Rashes and/or muscle pain

Psychological Disorders

• Anxiety

• Major depression

• Suicidal ideation

• Memory issues

These symptoms are generally very rare, but it’s important to know what to look out for. Visit your doctor if you’re worried about PFS.

How Long Do The Symptoms Last?

This depends on whether the reported symptoms are due to PFS, or side effects of finasteride treatment. Finasteride side effects should improve once you stop using topical or oral finasteride.

With post-finasteride syndrome, symptoms are commonly reported after stopping treatment. Many men see improvements in their symptoms, but there's no known cure.

How Is PFS Diagnosed?

As the condition is not officially recognised, diagnosis can be challenging.

Luckily, the post-finasteride syndrome foundation gives clear advice on diagnosing PFS [2].

Sufferers should have previously had finasteride (or dutasteride) treatment and be experiencing sexual dysfunction. Symptoms must continue for 3 months, or longer, after stopping the medication.

Sexual dysfunction is defined as:

• Reduction or loss of sexual desire

• Erectile dysfunction

• Reduced genital sensation

• Difficulties with orgasm

For diagnosis, you should not have experienced the same type of sexual dysfunction before. There must be no other explanation for your symptoms.

There's no common diagnostic procedure for diagnosing PFS, as it's based on symptoms. Blood tests and imaging may be used to rule out another medical cause. Tests depend on your symptoms but may include hormone levels, blood pressure monitoring, and cholesterol levels.

Is PFS Commonly Diagnosed

No, post-finasteride syndrome is very rare. One study estimates around 1,000 people worldwide suffer from the condition [6], but there's no official data to confirm this.

Treatment Options for PFS

Treatment options are limited, and there's currently no evidence that one treatment is more effective than others. Consult your doctor, who will offer treatments to manage your symptoms.

Medication

Your medical treatment should be tailored to your individual issues.

Erectile dysfunction may be treated with Viagra or a similar medication. If you're suffering from depression, talking therapies or anti-depressants might be suggested. For insomnia, your doctor may recommend lifestyle changes, or prescribe sleeping pills when it's very bad.

These medications aim to improve your quality of life but don't treat the cause of the symptoms.

Lifestyle Changes

A balanced and nutritious diet can improve your mental health and make you less likely to develop other health issues. Foods rich in vitamins, minerals, and antioxidants are good to include, whilst processed foods that are high in sugar, salt, and fat should be avoided.

Regular physical activity can positively affect your mood, energy levels, and overall health. Consult with a professional to help you find a suitable exercise routine.

Stress can make many PFS symptoms worse, such as anxiety, fatigue, depression, and erectile dysfunction. Stress management techniques like meditation and yoga can give you some tools to manage your stress.

Treatment effectiveness varies from person to person. It's important to follow a personalised approach.

Living With PFS

Living with post-finasteride syndrome can be challenging. The symptoms may affect many areas of your life.

Psychological Impact

Persistent sexual symptoms, like decreased libido and erectile dysfunction, can lead to feelings of frustration, anxiety, and low self-esteem. Low mood or depression can be exhausting.

It's important to seek professional help, especially if you're having suicidal thoughts. The Samaritans are a charity that's always there to listen, day or night.

Physical Impact

From fatigue to muscle pain, your physical symptoms can affect your quality of life Working closely with healthcare professionals can help you manage these symptoms and explore potential treatment options.

Social Impact

The varied symptoms of PFS, and how they make you feel, can affect your personal relationships. Sexual side effects, like erectile dysfunction and decreased sex drive, can interfere with romantic relationships and intimacy.

Your friends and family are there to help, don't be afraid to talk to them. Professional talking therapies are also available. With the right medication, your erectile dysfunction can also improve.

Ways To Cope With PFS

Whilst there are medical treatments that can help manage your symptoms, that's not the only way to get help.

1. Seek Support

   Connect with patient support forums and groups. Here, you can share experiences and find emotional support from others who are going through a similar experience. As the condition is rare, these groups are likely to be online.

2. Consult with Healthcare Professionals

   Seek guidance from healthcare professionals who are knowledgeable about PFS. Not all medical professionals acknowledge that PFS exists, but all of them can monitor your symptoms and suggest appropriate treatments.

   If you're hoping to find a specialist in PFS, the PFS Foundation has created a list here.

3. Practice Self-Care

   Self-care is different for everyone. Regular exercise, healthy eating, stress management techniques, and sufficient sleep can all help with your mental and physical health.

4. Communicate with Loved Ones

   By openly communicating with loved ones, you can help them understand the challenges you face. If they understand, they're better equipped to help.

5. Educate Yourself

   Learn about PFS, the symptoms, and potential treatment options. Empower yourself by staying informed about the latest research and developments – more on this below.

Current Research and Future Directions

So far, research into post-finasteride syndrome is limited. Studies have failed to show how finasteride causes the symptoms associated with PFS.

One study found changes in brain steroid hormone and gut bacteria levels in men suffering from PFS [3]. This may partly explain why PFS develops. Further research in this area could help to identify men more at risk in the future.

Another study reviewed all previously published studies, including clinical trials, on post-finasteride syndrome. It showed that a lot of PFS studies are small and low quality. More research into this area is clearly needed [7].

After assessing all of the studies, the review found that PFS probably happens in men who have changes in how their DNA is read by their bodies [7]. Currently, there's not enough evidence to say what the changes are, and how these changes lead to post-finasteride syndrome.

As PFS affects small numbers of men, it can be difficult to run more detailed studies. In the future, more research is needed to identify the exact cause of post-finasteride syndrome and to find an effective treatment.

Summary

Post-finasteride syndrome is defined as sexual dysfunction continuing more than 3 months after stopping finasteride treatment. However, in clinical practice, the condition isn't always recognised.

Finasteride is taken either for an enlarged prostate or male pattern hair loss.

Both diagnosis and treatment of PFS are based on symptoms, and the condition doesn't have one effective treatment option. Erectile dysfunction medications, talking therapies, and anti-depressants are some commonly used treatments.

Men reporting symptoms could be more likely to have pre-existing mental health issues and may have changes in brain steroid hormones. However, a lot more research is needed to understand post-finasteride syndrome and how to treat it.

Men suffering from PFS should seek help from a medical professional. Mental health services, family and friends, and online support groups are all available to help you deal with your condition.