Post-finasteride syndrome (PFS) represents a complex of symptoms due to the side effects of the drug finasteride. These are persistent neurological, sexual, and physical side effects. Even after discontinuation of the drug, the symptoms sometimes persist for a long time.
What is post-finasteride syndrome?
Post-finasteride syndrome is a term defined by doctors, the media, and patients to describe side effects of the drug finasteride. Finasteride is a so-called 5-alpha-reductase inhibitor, which is used to treat hair loss or benign enlargement of the prostate (BPH). It prevents the conversion of testosterone into the much more potent dihydrotestosterone (DHT). Symptoms of post-finasteride syndrome occur rarely, although the incidence is not yet clear. It is suspected that the number of people suffering from this syndrome is high. This could be due to the different manifestations of the individual symptoms. The effect of finasteride is based on the fact that the effect of the male sex hormone is reduced. This means that the typical symptoms of androgen deficiency can also occur as side effects. It is not known why some of the symptoms persist even after discontinuation of the drug. Post-finasteride syndrome was entered into the U.S. National Institutes of Health‘s Genetic and Rare Disease Information Center in 2015.
Causes
Post-finasteride syndrome is thought to be caused by taking the drug finasteride. This drug develops side effects that persist even after it is discontinued in some cases. Finasteride is a 5-alpha reductase inhibitor. Steroid 5-alpha-reductase is a complex of three isoenzymes responsible for converting testosterone to dihydrotestosterone. Dihydrotestosterone (DHT) is responsible for the actual effect of testosterone. If this metabolite is missing, symptoms similar to those of testosterone deficiency occur. Similar to testosterone, DHT binds to an androgen receptor in the target cell. This androgen receptor complex in turn binds to specific hormone response elements (HRE) of DNA, controlling the activity of androgen-regulated genes in the promoter region. This is true for both testosterone and DHT. However, the two hormones produce different effects. While testosterone is involved in the differentiation of Wolffian ducts, DHT ensures external masculinization and growth of the prostate. With a corresponding genetic predisposition, DHT can destroy the hair roots, resulting in hair loss. The drug finasteride therefore acts by inhibiting the conversion of testosterone into DHT. It stops the growth of the prostate gland and prevents hair loss in men. Since DHT is more effective than testosterone, the typical manifestations of androgen deficiency occur as side effects.
Symptoms, complaints and signs
Post-finasteride syndrome is characterized by impotence, low libido, decreased response to sexual stimuli, erection problems, weak orgasm, penile shrinkage, curvature of the penis, and numbness of the penis. Furthermore, the testicles may shrink. Sometimes testicular pain also occurs. Often, gynecomastia (breast enlargement in men) also develops. In addition to these symptoms, the affected person suffers from chronic fatigue, poor performance, muscle weakness, dry skin, slowed thinking processes, depression, anxiety or sleep disorders. Headaches, heavy sweating and chest pain are also part of the symptom complex. Even after stopping the drug, these symptoms may persist. In some cases, they remain permanently. It must be said, however, that according to current knowledge, these side effects rarely occur, although there may be a significant number of unreported cases. It is not known why symptoms persist in some cases even after discontinuation of finasteride, especially since hormone levels return to normal. It is suspected that in these cases there is a defect in the androgen receptors.
Diagnosis and course of the disease
Post-finasteride syndrome can be easily diagnosed. If these symptoms occur during treatment with finasteride and its discontinuation, post-finasteride syndrome can always be assumed.
Complications
As a rule, this syndrome itself is already a complication. In this case, those affected suffer primarily from impotence and also from a significantly reduced libido. This can lead to tensions with the partner and sexual unwillingness. Men suffer primarily from a weak orgasm and also from numbness of the penis itself. Furthermore, there is pain in the testicles and also fatigue and exhaustion. Patients also suffer from many psychological complaints and depression. Anxiety or sleep disturbances may also occur. Patients often withdraw and feel ashamed of these complaints. As a rule, there is no improvement until the medication is discontinued. Usually, in this syndrome, the drug must be discontinued and replaced by another. Complications do not occur and there are no further complaints. The life expectancy of the affected person is also not reduced in this disease. Likewise, the symptoms usually disappear relatively quickly after the drug is discontinued.
When should you see a doctor?
If unusual symptoms occur after taking the hair restorer finasteride, the doctor should be consulted. For example, if sexual or neurological symptoms occur, the urologist or the doctor in charge should be consulted. People who have been taking the drug for a long time should inform the medical doctor who prescribed the drug about the unusual symptoms and complaints. In addition to the family doctor, the complaints can also be taken to a urologist. Depending on the symptoms, neurologists and therapists may also be involved in treatment. It may be necessary to discontinue the drug completely. Since this is often associated with further side effects and the symptoms of post-finasteride syndrome can persist for months to years, it is important to see a doctor early. People who suffer from hormonal complaints and have low estrogen levels, for example, are particularly at risk of developing Post-Finasteride Syndrome. Other contacts are the sex therapist or a psychotherapist, always depending on the type and severity of the complaints.
Treatment and therapy
To date, there is no effective therapy for post-finasteride syndrome. Many attempts at substitution with androgens have been doomed to failure. Only some of the patients respond to this treatment. In other cases, there is no response to the administration of androgen derivatives. When the hormone levels of these patients were measured, it was noticed that the hormone levels had returned to normal, but the symptoms still persisted. The cause of this is not yet clear. It could be that there are defects at the androgen receptors. Testosterone and DHT are thus unable to exert their effect. However, further research is needed to explain why the receptors are only disturbed after treatment with finasteride has ended. Due to the increasingly known side effects of finasteride, there is a growing number of lawsuits filed by affected individuals against the manufacturer. Furthermore, many of those affected are also drawing attention to post-finasteride syndrome through spectacular actions, such as a hunger strike in front of the pharmaceutical company’s headquarters. Due to the growing public interest, the PFS Foundation was founded in 2012. The PFS Foundation aims to further raise awareness among medical professionals, scientists and healthcare organizations about the existence of post-finasteride syndrome. This is to raise awareness about the need for basic research and the search for therapeutic approaches in this field. To date, it is also not clear whether post-finasteride syndrome is really very rare or does represent a general problem with finasteride treatment.
Prevention
The best prevention of post-finasteride syndrome is to avoid treatment with finasteride.
Follow-up care
Patients suffering from post-finasteride syndrome should refrain from using finasteride as recommended by their physician. However, after discontinuing the drug, it is advisable to have a regular examination with a physician to monitor the exact development.In addition to medical advice, those affected can also start their own individual aftercare. This helps, for example, to remedy sleep disorders. Among other things, sleep masks and earplugs help, and it also makes sense to adapt the sleeping environment to the needs. Apart from good hygiene in bed, it makes sense to change the diet. Light meals in the evening make it easier for sufferers to fall asleep. Social and sporting activities also counteract psychological problems and at the same time help people to fall asleep. To avoid depressive moods associated with the syndrome, drug therapy may be worthwhile. Here it is important to follow the doctor’s recommendations exactly. Alternative medicine has effective remedies that have a calming effect. In this way, the typical signs can subside in the long term. Follow-up care also includes checking whether there is already a secondary disease. This would require a separate medical treatment.
What you can do yourself
If post-finasteride syndrome has been diagnosed, the drug must first be discontinued to prevent further intensification of the symptoms and complaints. The individual symptoms always require a medical diagnosis and can be combated to some extent independently. In the case of severe sleep disorders, measures must be taken to improve the quality of sleep. These include wearing earplugs and a sleep mask, as well as regularly changing the bedding. In addition, the diet should be adapted to the condition so that it is possible to fall asleep in the evening without any problems. Sports and an active lifestyle help with severe fatigue, problems falling asleep and depressive moods. Accompanying medication may be necessary. If necessary, the doctor can involve an alternative medical practitioner who can prescribe natural sedatives. A balanced diet and regular exercise are often sufficient to combat the typical symptoms of the syndrome. After a few weeks to months, the symptoms should have largely subsided. If the symptoms persist, medical advice is needed. It is possible that there is another underlying condition or that secondary diseases have already developed that require separate medical treatment.
