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27 September 2019 by CorNaz
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Post-finasteride syndrome: in Italy an association of patients. It is called the Finasteride Victims Association and collaborates internationally with the Post-Finasteride Syndrome Foundation (USA)
With almost 16 thousand reports of adverse events , 61 confirmed suicides in the world and 16 countries (including Italy) that added to the information leaflet of the drug finasteride the reports related to the so - called post-finasteride syndrome (PFS) , we start talking more and more about this particular pathology. The researchers that deal with it are few, just as there are few studies about it. Patient associations, therefore, can do a great deal to increase awareness of PFS and make people - doctors and others - aware of this problem, of which little is known. In Italy, the reference organization is the Finasteride Victims Association , based in Treviso, while the American Post-Finasteride Syndrome Foundation is very active internationally.
As explained on the website of the US foundation, the post-finasteride syndrome (PFS), which in the USA was officially included in the rare disease databases of the Genetic and Rare Diseases Information Center (GARD) and of the National Organization for Rare Disorders (NORD), is characterized by serious side effects that may persist for a long time after stopping a treatment based on finasteride, an inhibitor of the enzyme 5-alpha reductase type II used to treat hair loss (Propecia®, finasteride 1 mg ) or enlarged prostate (Proscar®, finasteride 5 mg). These adverse events include sexual, neurological, physical and psychological problems : for example libido loss, erectile dysfunction, depression, suicidal impulses, anxiety, panic attacks, Peyronie’s disease, penile narrowing, chronic testicular pain, gynecomastia, muscle atrophy , cognitive impairment and insomnia. The drug in question is available as tablets for oral use and is only available on prescription . Since there is a difference in price, the less expensive 5mg format, intended for the treatment of prostatic hypertrophy, is also sold, even to patients with androgenic alopecia. In this case, therefore, the patient finds himself having to manually divide each tablet into 5 parts, a procedure that does not guarantee a correct intake of the drug.
“After about a year and a half from the moment I found symptoms attributable to PFS, I turned to a law firm in Treviso,” says the President of the Finasteride Victims Association (AVF) . "I explained my situation to him and, since I was already in contact with other boys with the same problems, their advice was to found a real association. In this way we could be stronger, both from the point of view of communication, but also to guarantee the legal assistance of the members or to form a group to lend ourselves to interviews and research: thus, in 2017, the AVF was born ”. The association has about forty members, from 20 to 40 years, all affected by the side effects, even serious, related to the use of finasteride. In these cases, we talk about a real post-finasteride syndrome when these side effects become chronic, persisting for months and years after stopping the drug treatment .
The problems around which this disease revolves are delicate: the physical symptoms (from those related to the sexual sphere to fatigue) and the psychological ones (depression, anxiety, psychosis, etc.) mean that patients, especially the younger ones, do not they are able to talk about it with simplicity, especially if from the medical point of view they lack the knowledge of the pathology and, even worse, the real understanding of what it entails.
“We would like more attention from the clinical world ,” the President of AVF continues. "We are visited by andrologists and endocrinologists, but after routine analyzes - which do not show any alterations - they send us to the psychologist: many patients with PFS are not recognized as such . The important thing would be the official recognition of this syndrome , which could also give an additional boost to research. Although awareness and research are still lacking, something is starting to move, thanks to the numerous reports of persistent finasteride-related side effects that reach pharmacovigilance agencies around the world. For example, the illustrative leaflets of the drugs containing the active ingredient have changed a lot compared to 10 years ago: today, a series of symptoms classified as persistent has been added ".
“For those patients who have already taken finasteride, and developed PFS, it is important to realize that unfortunately, at present, there are no known effective therapies ,” emphasizes Philip Roberts, Patient Manager at the PFS Foundation . "However, in the last 7 years we have come a long way in terms of medical research. No one knows how long it will take to develop valid therapies for the disease, but we hope this happens within the next 2-5 years. In the meantime, of course, we need funding to continue to sponsor research projects: for this reason, we invite everyone to donate to research. For those men who have never taken finasteride, but are considering the use of the drug - concludes Philip Roberts - our advice is not to take it for any reason: its many potential dangers far outweigh the probable benefits ".
