Информационное собрание ПФС

Пациенты и близкие плачут

Когда мы основали Фонд ПФС в 2012 году, наша миссия выглядела так: способствовать исследованиям характеристик, основных биологических механизмов и методов лечения постфинастеридного синдрома. Тогда мы даже не думали о поддержке тех, кто страдает этим заболеванием. Тем не менее, всего через несколько дней после нашего запуска пациенты с ПФС и их близкие начали обращаться к нам, столкнувшись с побочными эффектами, прося ответов и отчаянно нуждаясь в помощи. Кто-то звонил по телефону, кто-то по Скайпу, кто-то стучал в нашу дверь в нерабочие часы. Однако в основном они писали нам по электронной почте со всего мира. Поэтому перед лицом надвигающейся эпидемии мы чувствовали себя обязанными применить более практический подход. К 2018 году эти усилия были закреплены в программах, которые в настоящее время перечислены в разделе «Услуги для пациентов» на нашем вебсайте. Тем не менее, запросы продолжали поступать — и поступать — и к началу 2020 года превысили 2000, без каких-либо признаков замедления. Именно тогда мы задумали сделать Информационный Центр ПФС. Делясь с миром репрезентативной выборкой жертв, которые каждый день поступают в наш почтовый ящик, мы надеемся просветить тех, кто все еще сомневается в этом ужасающем состоянии. Мы также надеемся, что посредством обновлений состояния, относителньо каждого конкретного случая, мы покажем тем, кто находится на ранних стадиях ПФС, что определенный процент других пациентов со временем постепенно улучшился.

Обратите внимание, что эти электронные письма с разрешения их авторов не редактировались каким-либо образом, кроме удаления нескольких посторонних отрывков (обозначенных […]) для

  • PFS Patient (male)

    I was heavily influenced into thinking the drug was safe by misinformation on Youtube.

    As more clinicians are starting to speak out against the devastating effects of finasteride have you considered sending out a mass e-mail asking if they would be willing to make a video on Youtube sharing their views on PFS to provide more awareness and legitimacy for the condition. Currently there are a lot of anti PFS videos on Youtube. This could go a long way towards awareness which can hopefully lead to more research opportunities as well as preventing vulnerable individuals from taking the drug in the first place. I was heavily influenced into thinking the drug was safe by misinformation on Youtube. Thanks, Marc.

    MJT, 36, Mississauga, Canada: August 2021

    Condition update: April 2022

    Committed suicide

  • PFS Patient (male)

    Been suffering from PFS for 13 years with no improvement.

    Been suffering from PFS for 13 years with no improvement. Has anyone tried PRP therapy? Are there any other treatments that show promise? I’ve tried many things with zero results. One issue, among many, I have been dealing with is what I would describe as a brutal anxiety disorder. I would have regular attacks, sleeping or awake, that would make my blood pressure skyrocket, numb from head to toe and have trouble breathing. Like I’m going to suffocate. I started taking Effexor and for the last 9 years I have been able to somewhat control the attacks. Recently, I started having them again. Has anyone else experienced this?

    TS, 32, Tigard, Oregon: Nov. 11, 2018

    Condition update: August 2020

    No improvement

  • PFS Patient (male)

    I had some consultations with urologist, endocrinologist, dermatologist, etc. They just ignore my condition and said is all in my head.

    My name is …Alex… iam 30 ys old male from Portugal. I dont smoke, no alcohol no drugs no meds, practice swimming etc. I work as a Heath care profissional I took finasteride 1mg daily bases during 2 years (2013-2015) i had 23-25 yes old. During this 2 year i had experience side effects gradually like prostatitis, weak urinary flow, num penis, penis and balls atrophy, 0 libido, extreme brain fog, extreme extreme fatigue, suicidal thoughts, insomnia, ED, 0 morning wood or spontaneous erections, i dont had sperm right like i was castrated, cold penis, my skin is like paper and list go on and on.  The side effects went more severe after i stopped the drug like i had crash. During the period 20 months off the drug and no recovery. I had some consultations with urologist, endocrinologist, dermatologist, etc. They just ignore my condition and said is all in my head…unbelievable […] They know nothing about post finasteride syndrome in Portugal. I felt It was impossible live with this condition (i cant date marriage or have kids like this. I am useless and iam worth more like crap.  I can’t wait longer for a cure, that is very unrealistic…its a rare condition… I’m going to kill myself in a short term…).

    AA, 30, Setúbal, Portugal: Aug. 10, 2017

    Condition update: September 2020

    Considerably improved

  • PFS Patient (male)

    I can’t even speak any more words and crying right now. pleassssssssssse help.

    my name is Kassim, from Iraq and i am a general practitioner. i had used propecia for 3 years and now i am completely impotent and weak. please please, i would highly appreciate you if you can help me or give me the adrress of a professional, preferably Dr. Shalender Bhasin, to talk with him. i am disappointed. believe me I can’t even speak any more words and crying right now. pleassssssssssse help. waiting for answer

    KA, 36, Erbil, Iraq: June 4, 2014

    Condition update: September 2020

    Unknown

  • PFS Patient (male)

    everything seems to be disintegrating. Soft tissue, bone, cartilage, collagen, muscle atrophy, testicular cancer, eye sight, taste, smell, hearing.

    I have suffered from pfs for 20 years now. Unaware of the culprit to my deteriating health I took it on and off until 2015. I have every side «more than what is listed.» My health is continuing to deteriorate. I am gripped by suicidal ideation and the most debilitating cognitive problems. Physically the problems are now unbelievable as everything seems to be disintegrating. Soft tissue, bone, cartilage, collagen, muscle atrophy, testicular cancer, eye sight, taste, smell, hearing and so much more. All medical interventions have made me worse. my personal life has been destroyed, work, marriage, freinds some family, all gone. I don’t know how I’m still here. I was wondering if you wanted my story, could advise anything that could help as I’m quite unique in that I’m one of the unlucky few who gets worse and is still alive from this Frankenstein like drug.

    RC, 48, North Shields, England: Sept. 25, 2020

    Condition update: September 2020

    Extremely bad

  • PSA

  • PFS Patient (female)

    I went from a marathon runner to not having anything in me to run.

    I was given finasteride from a dermatologist for hair loss in 2013. I took it for 2 weeks and felt weird and decided to get off. I had a horrible crash. Cognitive thinking was gone and memory impairment. I then noticed the white of my eyes turning grey and very sunken in and vision was impaired. I was at a point where I had no control over falling into a deep sleep anytime and anywhere. Deepest sleep ever, to then having severe insomnia. The crash lasted a very long time. Lost my passion for life and seemed emotionless. Zero energy or stamina. I went from a marathon runner to not having anything in me to run, no fuel. I got on hormone replacement therapy and it has helped me so much! But I would like information on how to help myself to get out of these feelings when they hit […] If you can help me in any way, I would appreciate it. There just doesn’t seem to be a lot out there for women.

    AR, 58, San Antonio, Texas: Aug. 5, 2018

    Condition update: August 2020

    Considerably improved

  • PFS Patient (male)

    I had a penis ecography done wich showed some fibrosis on the corpus cevernosum.

    Hello, I am 27 years old, study Engineering and live in Buenos Aires. Four months ago I developed Post Finasteride Syndrome. I have been diagnosed by a top Andrologist. He is aware of the condition and is currently treating me. He heard about this syndrome at a conference where Dr. Abdul M. Traish was giving a lecture on the subject. I am also beeing treated by a Psychiatrist and a General Practitioner who are also aware of this condition and agree on the diagnose. It was hard to get any doctor who knew something about this. All my blood tests are in range. I had a penis ecography done wich showed some fibrosis on the corpus cevernosum. (phisical proof of my condition). Together with this I got pains on my testicles and penis, shrinking of the penis, changes in the penis tissue, strange veins on the penis and very dry skin. For now I do not have any mental symptoms other than the ones logical due to what I am going through. But I am not deeply depressed. My Psychiatrist can confirm this. Although this condition has altered my life completely […] Thanks in advance for the amazing job you are doing. You are giving hope to thousands of people around de world. Not only the men affected by this horrible syndrome, but to their families/friends.

    JG, 27, Buenos Aires, Argentina: Jan. 21, 2015

    Condition update: August 2020

    Slightly improved

  • PFS Patient (male)

    The world came crumbling down when I started having pins and needles in my extremities… almost like I was halfway to being paralyzed.

    I seem to be suffering from PFS. I’ve been taking Propecia for 10 years now. It was originally prescribed to me by a dermatologist and refilled over the years by any doctor I saw, none of which ever mentioned any potential side effects. I first had anal pain when I was 25 and doctor said I have hemorrhoids, which I always thought was strange at such a young age. They’ve bothered me ever since. When I was 27 I started having back pain, and to this day was not able to figure out why. Doctors were stumped as all tests were fine. Throughout 2018 I started having more muscle pain: both wrists, both knees and elbows, my neck, and more. The world came crumbling down when I started having pins and needles in my extremities, which quickly turned into an overall body weakness, almost like I was halfway to being paralyzed. I went to the ER and was sent home as they couldn’t find anything wrong. I then saw multiple specialists: neurologists, rheumatologists, etc. I decided to stop taking all supplements, and for the first time since I started, Propecia. I know now stopping cold turkey was a huge mistake. 3 weeks later my crash hit me: my vision changed, I was dizzy when I closed my eyes so sleep was close to impossible, night sweats and tremors if I could sleep, severe depression and suicidal ideation, extreme fatigue, severe cognition issues, and more. I saw an Osteopath who did Cranial Manipulation Therapy who saved my life, halfway through our session my depression and suicidal thoughts were completely wiped away.

    MT, 33, Los Angeles, CA: March 29, 2019

    Condition update: September 2020

    No improvement

  • PFS Patient (male)

    I am petrified.

    Please help me. I took Finasteride for five days—and one week after stopping I still am completely unable to have an erection. Please tell me there is a chance I will recover from this. I am petrified.

    SK, 29, London, England: Aug. 27, 2019

    Condition update: October 2020

    Slightly improved

  • Son of Patient

    The police had to be called yesterday.

    My father has been taking 5mg finisteride for over 2 months. In the last 2 weeks his mental health has deteriorated, and I’m very concerned it’s finisteride. He’s not taking any other medication, bar tamoulison. He is 75. He becomes very irrational, manic, shouting, suicidal, insomnia, tinnitus. A complete switch in character. The police had to be called yesterday. […] I cannot rationalise with my father anymore despite my best intentions. He becomes aggressive and overly hostile. Nonsensical. Constantly writing notes about his problems. Verbally abusive […] I’m very concerned it is finisteride causing the problems. I do not believe my father has developed a serious natural decline in mental health.

    DK, Omagh, Ireland: Jan. 16, 2020

    Condition update: October 2020

    No improvement

  • PFS Patient (male)

    my wife…gets very frustrated with my lack of sex, caring, emotions, etc.

    I have been suffering from PFS for eight years now. I am learning to adjust, however, my wife is not. Is there anything out there to help her? She gets very frustrated with my lack of sex, caring, emotions, etc. Any help is appreciated. Thanks.

    BL, 46, Fresno, CA: Jan. 25, 2019

    Condition update: September 2020

    Slightly worse

  • Father of Patient

    last night he disappeared in his car…he had driven about 25 miles to…a particular place which my wife says is well known for suicides.

    I am writing to you about our son who is 26 and we have just discovered the reason why he is in such bad shape. We have known for some time that he suffered from depression and more recently almost constant suicidal thoughts. We live in Kent, England and he has seen our family doctor and even a specialist in a nearby large hospital but it came to nothing. Whenever we asked him what news he had he told us that the doctors didn’t know what the problem was. However, last night he disappeared in his car without saying a word and when we became concerned about where he was, he texted him and found out that he had driven about 25 miles to the south coast, a particular place which my wife says is well known for suicides. When we learnt where he was we called him and spoke to him for a while, he was in bad shape, we tried to get him to drive back home but he said he was too tired. He drove back this morning and that is when it came out that he had taken finasteride because he was worried about hair loss. When he told us about this, we had a look on the internet and read sections of your website which appear to describe exactly what he is going through.

    LG, 56, Kent, England: May 24, 2016

    Condition update: August 2020

    Considerably improved

  • PFS Patient (male)

    My doctor attributes these symptoms to the confinement by the coronavirus and refuses to do tests or hormone analysis.

    I took finasteride after having a hair graft in January. I have taken it for almost 3 months, and just a month ago I stopped taking it when I noticed some symptoms, weaker erections, and some testicular pain. Since I left it a few days ago, I noticed a low mood, very low libido, erection problems, but especially a huge drop in reaching orgasm. I know that it may be soon since I stopped the drug and should give a little more time, but what It is true that I am beginning to worry but above all to get angry. My doctor attributes all these symptoms to the confinement by the coronavirus and refuses to do tests or hormone analysis… I should give some more time to that the symptoms subside ??? or should I instead worry ??? Greetings and thanks from Spain.

    AF, 41, Bilbao, Spain: May 27, 2020

    Condition update: September 2020

    Slightly improved

  • Mother of Patient

    He’s in danger of losing his job and all is crashing down around us.

    My son Alex has been taking Finasteride for about 6 months. He’s hearing voices, he’s very paranoid and continues to think someone has poisoned his food. I took him to a physician after he stopped going to work and can’t function right now. He is in fear that people are following him and he says people are talking to him in code. The physician he went to says he needs to see a psychologist […] Please help me understand what’s wrong with my son and how I can help him. He’s in danger of losing his job and all is crashing down around us. Do you have a treatment for him that will help? He is also very depressed at times and feels worried and hopeless.

    GM, Palm Bay, FL: Aug. 14, 2019

    Condition update: August 2020

    No improvement

  • PFS Patient (male)

    I am using since one year and my semen not even get out of my penis!!

    Hi how are you? How long takes to fenasteride get out of my body? I am using since one year and my semen not even get out of my penis!! Thanks

    LT, 37, São Paulo, Brazil: July 12, 2016

    Condition update: September 2020

    Extremely bad

  • PFS Patient (male)

    I am an 18 year old with post-finasteride syndrome.

    I am an 18 year old with post-finasteride syndrome. I can not study, not remember anything. I need help.

    KG, 18, El Torno, Bolivia: Aug. 4, 2016

    Condition update: September 2020

    Slightly worse

  • Wife of Patient

    If he’s not going to help himself I would like to get some support myself.

    I am writing regarding my husband and the severe damage PFS has done to both him and our marriage. Because he is a physician, he refuses to seek help from anyone, claiming there is nothing anyone can do. My husband took Propevia for about 15 years (unbeknownst to me) and once off the medication, he completely changed. I have been living with this for 2 years and totally unable to discuss it with anyone. It’s been hell, quite frankly. Is there somewhere to direct those that suffer from PFS? If he’s not going to help himself I would like to get some support myself.

    GM, 47, Salinas, CA: Aug. 17, 2018

    Condition update: October 2020

    Unknown

  • PFS Patient (male)

    Since I don’t feel anything on my genitals, I can stay naked in front of my mother without shame.

    I need help. I’m another person for 8 years. My parents wonder why i don’t want to get married and build a family. I’m 28 years old and cannot have a normal sexual life. I cannot maintain an erection while I’m standing up. I feel that my brain is completely disconected from my penis. I saw 3 urologists, two endocrinologist, two neurologist, one sexologist and nobody was able to find what is my problem. They think it is psychological but it is not. I’m a marathon runner. I have never had any health issues in my life. I really don’t understand what is going on. I became a very violent person. I hate girls, I hate everybody. I often feel like I want to kill somebody or kill myself. I’m not feeling like a man anymore. I have some strange ideas. Since I don’t feel anything on my genitals, I can stay naked in front of my mother without shame. Please help me heal.

    NE, 28, Reims, France: July 6, 2017

    Condition update: August 2020

    No improvement

  • PFS Patient (male)

    I feel like it might have messed up my job and marriage. I don’t know what to do.

    I started taking Propecia and Xanax about a year and a half ago and I feel like it ruined my life. I got so paranoid and depressed that I was having suicidal thoughts and delusions. I stopped both a little while back after reading some stuff that made me realize they might have been causing my problems and I’m feeling some better. But I feel like it might have messed up my job and marriage. I don’t know what to do.

    JK, 36, Starkville, MS: Oct. 16, 2018

    Condition update: October 2020

    Considerably improved

  • PFS Patient (male)

    Is there any Specialist in European Union who efectivly cures this syndrom?

    Hi, I have PF syndrome. I live in Poland. I am going from Doctor to Doctor, I make medical examination and they are fine. They only suggest to get higher a bit testosterone, nothing else. I had 9 such visits. Is there any progres in Yours researching? If yes, when they will be published? Is there any Specialist in European Union who efectivly cures this syndrom? WHAT CAN I DO TO DECREASE SIDE EFECTS (MOSTLY SEXUAL) EXCEPT SPORT AND HEATLY FOOD WHICH I ACTUALLY DO? Thanks for Your respond 🙂

    AT, 28, Kraków, Poland: Dec. 13, 2014

    Condition update: August 2020

    Slightly improved

  • Mother of Patient

    Please tell me, is there hope?

    My son was on Propecia for 3 months. He now suffers from panic attacks, depression, anxiety and has had 2 bouts of UTIs. He is seeing a psychiatrist who has him on Zoloft and Abilfy. This is not really helping. He has only gained 30 pounds from being on the meds. Once a happy, smart young man is now struggling in school & in life. Please tell me, is there hope? Should he be on anti-depressants? Can you guide me in the right direction?

    RL, Randolph, NJ: Sept. 29, 2016

    Condition update: March 2020

    Slightly improved

  • Mother of Patient

    He is a living dead man.

    My son is 29 years old and has a severe PFS. He has been destroyed by this molecule and can no longer live it. He lost his sexual functions, he no longer has a pudendal nerve, no longer feels any sensation, has no connection between the brain and the genitals, no attraction. He is a living dead man. Can I call you for help to find out if there is any hope of getting out? Is there research? Please help us.

    MC, Limoges, France: June 15, 2020

    Condition update: October 2020

    Much worse

  • PFS Patient (male)

    a neurologist…diagnosed me with a slow progression of…Lou Gehrig’s Disease.

    I started taking finasteride in December 2011 because the facility that did my hair restoration said they wouldn’t guarantee my procedure if I didn’t take it. Although I’ve never had any sexual side effects I struggled with other side effects. Emotional side effects included large amounts of anxiety and small bouts of depression. Physical side effects included headaches, brain fog, numbness in my arms, major shaking in my hands, muscle twitching (aka fasciculation) and muscle atrophy. As my side effects worsened I decided to quit taking Finasteride in December 2018 and went to see a neurologist that diagnosed me with a slow progression of ALS aka Lou Gehrig’s Disease. Because my neurologist wasn’t concerned about Finasteride playing a role in my diagnosis I made the decision last week to go back on it and within three days the aforementioned physical symptoms which had ceased this past year immediately started back up again. Can you please reach out to the PFS community to see if anyone is willing to share a similar story to mine, that being less of sexual dysfunction and more of neurological dysfunctions that may have even led to misdiagnoses of a disease like ALS?

    JV, 50, Littleton, Colorado: Dec. 3, 2019

    Condition update: August 2020

    Considerably improved

  • Mother of Patient

    He has progressed from being somewhat hopeful to being very bitter, angry and unfeeling towards everything and everyone.

    I’m the mother of a son with PFS. He’s 43 years old and unmarried. He’s a Navy JAG officer stationed in California. Last September he began taking Propecia and took it for 52 days before he found out about its side effects from his doctor. He has in the past year experienced impotence, deformity, depression and he believes his brain has been affected. He has progressed from being somewhat hopeful to being very bitter, angry and unfeeling towards everything and everyone including his family. He refuses to get any psychological help and won’t even hardly talk to us anymore, because he doesn’t want to hear it. He refuses to come home ever again. We don’t know what to do to support him and keep him from disassociating himself from the family.

    PM, Baltimore, MD: Oct. 16, 2019

    Condition update: October 2020

    Unknown

  • PFS Patient (male)

    From being perfectly healthy both mentally and physically the worst nightmare I can think of started.

    I started taking Propecia when I was around 19 years old, took it for 4-5 years and shortly after I quitted back in 2004, I went into the PFS «crash» over a night. From being perfectly healthy both mentally and physically the worst nightmare I can think of started. Many years of medical investigations around my symptoms started and no one ever found out what the actual cause was. It was not until 2017 actually that I randomly saw something online that later led me to the pfs foundation. After 13 years of not knowing what was wrong with me I finally had found out. When I red in the forums of people describing their symptoms I was 100% sure that this was it and the greatest mystery of my life finally came to an end. To me it has always been pure neurological side effects, never had any sexual issues that some people describe. I would say around 2007, three years after, I was recovered to maybe 60%. It slowly and gradually became better and today, 16 years later, I’m probably at around 80-90%. It varies. I have two kids and a wife today, a descent job in IT as a programmer. So it is possible to move on after all this but it has been extremely tough.

    CH, 39, Stockholm, Sweden: Jan. 24, 2020

    Condition update: August 2020

    Considerably improved

  • PFS Patient (male)

    But for your efforts providing hope, I probably wouldn’t be alive today.

    I am writing this short message to let your foundation know how important its work is to the thousands of men affected by finasteride. But for your efforts providing hope, I probably wouldn’t be alive today. Six months ago (after taking only 9 pills), I found myself afflicted with post-finasteride syndrome, and since then my life has been fundamentally altered. I cannot thank you enough for what you are doing, and I will continue to contribute to the research initiatives.

    DS, 37, Denton, TX: Nov. 7, 2013

    Condition update: April 2014

    Committed suicide

  • PFS Patient (male)

    I’m in shock that my worse fears are true.

    I have only just discovered this site and I’m in shock that my worse fears are true. I have been on Finasteride for 20 years and experienced to typical problems. I tried coming off it several times but felt worse and was convinced by doctors to stay on it and reduce the dose to second daily. I have been off its for 16 days now and am experiencing the crash. Mood anxiety, no sex drive at all, i cant get an erection and have burning tingling in my arms. Do things improve if i stay on it? Are there any experienced practitioners in Brisbane Australia you know about?

    DS, 46, Brisbane, Australia: Jan. 24, 2019

    Condition update: September 2020

    No improvement

  • Girlfriend of Patient

    I’ve found draft suicide notes in his Gmail for myself, his mom and brother.

    My boyfriend believes that he is suffering from PFS, but we have not found a doctor who has believed him, much less been able to help him. He was taking Propecia about a year ago, briefly stopped, picked it back up in the Spring, and then stopped taking it all together July 2019. This is when his side effects began. Since, he has not been the same. Mentally or sexually. It is worsening by day. Having already been diagnosed with depression in prior years, his suffering is extra dark. He’s had suicidal ideation and extreme depressive episodes. I’ve found draft suicide notes in his Gmail for myself, his mom and brother. He is absolutely scarred from taking any sort of medication because of what has happened, and therefore does not want to go on any sort of anti-depression medication. I’m in need of someone to talk to about this, someone who knows what this syndrome is all about.

    WA, Queens, NY: March 16, 2020

    Condition update: September 2020

    Slightly worse

  • PFS Patient (male)

    I have accepted my destiny to be single forever but I can’t live with this depression.

    I’m 30 year old PFS patient from Iran. I have been having PFS since 2010. I have been monitoring your website closely for any news but nothing obviously. I just wanted to make sure if you haven’t reached any solution yet or if there is any hope! Mr. Roberts I’m suffering deeply, depression and lack of energy are killing me. I have been fighting for almost 7 years alone, I can’t do this more. No doctors believe me. Drugs and supplements were of no use, exercise didn’t help. In fact I don’ have energy to do it regularly! I don’t need sexual desire and potency, I have accepted my destiny to be single forever but I can’t live with this depression. I have NO ENERGY to do even daily routines. Can you imagine that?! I cry twice a day and nobody knows this except myself and my GF which I lost her 5 years ago. Please keep my email secret and private. I can’t fight this anymore I just can’t… please, any hope?!

    SA, 30, Al Jahra, Kuwait: July 30, 2017

    Condition update: August 2020

    No improvement

  • Mother of Patient

    For him, the most devastating of all is the shrinkage of his penis.

    My son, age 34, had taken Finasteride, for seven days. He stopped taking it three days ago because of low sensitivity and erectile problems. Since then, he has had severe sexual problems, including complete inability to obtain an erection. For him, the most devastating of all is the shrinkage of his penis. He has also experienced «dark thoughts» and ideas of suicide because of this. He finally confided in me because I am an Registered Nurse. We have both now familiarized ourselves with the research and your site. It does not look hopeful. Is there anything at all he can do? Is there more research into neuroactive steroids? Is there any hope because he was on the drug for such a short time? He has consulted with a doctor but, as you are familiar, he had no knowledge at all and suggested that he just wait for three months for the symptoms to improve. My son, understandably, is extremely distressed.

    LH, 59, Courtenay, Canada: Sept. 20, 2016

    Condition update: September 2020

    Considerably improved

  • Mother of Patient

    My son…is feeling suicidal and can’t bear the thought of continuing his life as it is.

    My son has been suffering from PFS for the past three years, his symptoms appear to be getting worse with time. He is unable to sleep and can go three to five days without any sleep. Excercise seems to make sleep impossible. He is only 31 and only took the tablets 5 times for baldness. He is feeling suicidal and can’t bear the thought of continuing his life as it is. Are there any support groups I can join to help me deal with his depression and symptoms?

    LA, New Germany, South Africa: Jan. 19, 2019

    Condition update: August 2020

    Considerably improved

  • PFS Patient (male)

    The biggest issue was that my cognitive ability was seriously damaged.

    I am a patient who went through pfs, from outside-US. I had taken finastride for short-term and the last time I had taken the last pill is more than a year ago. I had been suicidal for quite a while since I had a severe side effect while I was taking it and after I quit taking it. The biggest issue was that my cognitive ability was seriously damaged, and I was only able to identify this myself when I realized that I was not able to solve the problems in my textbook (I was in college then, and I still am) which I previously had solved quite easily. It’s pretty hard to identify that the drug is giving me cognitive damage since it develops gradually, and there’s also the depression the drug gives itself that hinders clear judgement.

    JS, 23, Andong, South Korea: Jan. 1, 2020

    Condition update: October 2020

    Considerably improved

  • PFS Patient (male)

    The insomnia robbed me of almost all the senses.

    About 15 years ago I noticed that my hair was thinning and so I decided to visit my skin doctor Dr. Fabro. Since my hair loss was androgenetic nature, he suggested Propecia. The side effects were minimal and rare. Depression was not a topic of discussion at the time, and for me it was not an issue either. I have now taken the drug since 2016. In October 2015, I felt an abrupt emptiness in my friend’s office one afternoon. This was followed by panic attacks and sweating. My girlfriend was shocked and could not understand this sudden change of mood. After some time I calmed down and went home to bed. The following night I could not close my eyes, got new attacks with sweating, as well as reflux-like bruises. The next day I visited my then family doctor Dr. Kleffel. He gave me demesta, the antidepressant citalopran, and a blood pressure reducing agent. I took them all, but the situation did not improve, and I voluntarily enrolled at the psychiatric clinic of Münsterlingen […] but the attacks became worse. My body changed totally, despite very good nutrition. I gained about 10 kg in a short time, lost all body hair and got extremely strong tinnitus. I also noticed a complete libido loss and extreme muscle loss. The insomnia robbed me of almost all my senses. By the end of 2015 I noticed again a severe aggravation of my condition. Since I continued psychiatric treatment, I mentioned to my doctors I took finasteride for hair loss. Dr. Bäurle said that only about 1% of patients had side effects. But at last I had discovered with horror what really triggered my terrible depression.

    RW, 69, Lugano, Switzerland: April 14, 2017

    Condition update: August 2020

    Vastly improved

  • PFS Patient (male)

    My doctors have given up.

    Since I stopped Finisteride in December 2017 I have had huge problems. I now have symptoms associated with Sjogrens so my glands aren’t working properly. I do not produce enough tears for example. They couldn’t diagnose Sjogrens but found inflammation from a lip biopsy so call it Sicca Syndrome. My hair is now brittle, dry, and thin. My mouth doesn’t produce as much saliva. I have sebum spots on my lips. I suffer chronic fatigue sometimes. I now get chronic paraesthesia and muscle twitching. I lost my girlfriend, and I will lose my job. I am very scared. I firmly believe that the Finisteride did this. I am so desperate I am just asking for any sort of advice and help. My doctors have given up. Kind Regards.

    GL, 40, Somerset, England: Oct. 13, 2019

    Condition update: October 2020

    Much worse

  • PFS Patient (male)

    I still have these symptoms: Penis Shrinkage (mostly the diameter and the head of penis are thinner), Scrotal Shrinkage, Peyronie’s disease

    I’m Italian but I live in Paris (France) since 2005. I’m now 34 years old (1979) and I’ve taken Propecia (finasteride 1 mg) since 2002. I’ve recently stopped (3 months now) cause my problems were becoming more severe. And making some internet research I’ve found that my problems weren’t only mine. I still have these symptoms:
    -Penis Shrinkage
    -Scrotal Shrinkage
    -Peyronie’s disease
    -Decreased semen volume and force
    -Pain on the Left Testicle
    -Sex Drive Loss
    -Dry Skin
    -Depression
    -Suicide Desire or self Violence
    -Fast mood changes
    -Memory Loss
    -Irregular Mental Abilities. My girlfriend and my parents cannot believe How i can possibly be both. I don’t know what to do and don’t know where to go for help. It seems that US is the only country taking PFS seriously. Please let me know if there is a doctor in France or Italy that can help me.

    DF, 34, Paris, France: March 3, 2014

    Condition update: August 2020

    Slightly improved

  • PFS Patient (male)

    Please warn others.

    I started taking Finasteride for the prostate…4 weeks in I started to get slurred speech & brain fog.. Didn’t put the two together.. until nurse friend said «Have you started new medicine?» Then I stopped Finasteride.. But I was already in my eight week. Still not back to my old self….Please warn others.

    DS, 52, Brooklyn, NY: Feb. 24, 2019

    Condition update: September 2020

    No improvement

  • PFS Patient (male)

    I am very depressive man.

    I am Sebastián I am 25 years old, I have used the propescia two years ago and since that I Have had sexual disfunction, I am very depressive man. I also have suicide ideas because I don’t know what to do. Could you recomend a doctor or a clinic any where to try me?

    SA, 25, Mexico City, Mexico: Nov. 19, 2018

    Condition update: October 2020

    Slightly worse

  • PFS Patient (male)

    I’m really so worried. I had no idea about PFS.

    I’m 21 and I’ve been on Finasteride for about 20 days for hair loss. My lips, face and head of my penis have been very dry. I haven’t been able to maintain an erection, or when I do they’re painful. I’m gonna stop taking the drug, but do you think my side effects will be permanent?? I’m really so worried. I had no idea about PFS.

    HS, 21, Cincinnati, OH: Feb. 18, 2019

    Condition update: August 2020

    No improvement

  • PFS Patient (male)

    Today i am facing severe testicle pain and i don’t know which doctor to approach.

    I have been using finasteride on daily basis for really long time. i guess for 6-7 years at least as suggested by my doctor for treatment to hair loss. but after all sexual problems side effects started happening, also suffering from severe testicle pain randomly, I stopped using the hair loss medication for over a year now. but the side effects persist. Today i am facing severe testicle pain and i don’t know which doctor to approach. i am taking pain killers (ibugesic plus, vovron d) but to no use. Please help me because i can’t talk to my family about it. i am 32 year male in lot of pain.

    NS, 32, Meerut, India: July 23, 2019

    Condition update: September 2020

    No improvement

  • PFS Patient (male)

    if I were younger and wanted children I wouldn’t be able to father them. What is it worth to be able to have children?

    I was prescribed Finasteride in 2010. I took it for 3 months […] The side effects were a nightmare. First was the depression. I couldn’t shake it. I had times when I thought of suicide. The next thing my performance at work—way below what it had previously been. I kept wondering what was wrong with me. Then I started developing physical effects. My breasts enlarged and had lumps in them. My penis receded until I had to push the shin back to get hold of it so I could urinate. My sleep became less restful with more waking periods. I experienced hot flashes. My Doctor sent me to another Doctor who prescribed Testosterone Cream. This made the swelling in my breasts recede. I’m now also taking medication and counseling for depression. All these effects are still with me. We have had our children, but if I were younger and wanted children I wouldn’t be able to father them. What is it worth to be able to have children? What is it worth to be able to have a normal sex life?

    GH, 76, Idaho Falls, ID: March 18, 2014

    Condition update: August 2020

    No improvement

  • PFS Patient (male)

    I’ve not taken Propecia for almost 11 months now. Can side effects come back even after discontinued use?

    I took Propecia for 17 years from the age of 17 to 35 and I stopped taking the drug after I began experiencing the sexual side effects that appear to be dangerously common. Up to that point, I had not experienced any side effects from finasteride. After I discontinued Propecia, I continued to have sexual side effects for around a month. Then my body slowly recovered as did my sexual health. I’ve felt pretty normal for the past 10 months, but then recently the same sexual side effects have come back. My question is: I’ve not taken Propecia for almost 11 months now. Can side effects come back even after discontinued use? I find this to be very odd as I thought my body had recovered and by this point, I would assume that the Propecia would be completely out of my system.

    GB, 36, Akron, OH: Aug. 4, 2020

    Condition update: October 2020

    No improvement

  • Mother of Patient

    He was a happy, easy going, kind and caring teenager and Propecia has made him mentally disabled.

    My son, 31, had a mild form of BDD and was worried about his hair thinning and took Propecia in 2013. He was taking it for 4 years during which his personality changed beyond recognition and I suspect he developed PFS. He experienced severe side effects: insomnia, loss of libido, obsessive thoughts, anxiety, depression and suicidal ideation. These deteriorated since he stopped taking Propecia in 2017. He was no longer able to go to work, lost the ability to sleep well, was unable to care for his 2 daughters and is feeling increasingly suicidal. He had to go to the emergency department twice this year and now is in a mental hospital in New York. Vulnerable young people should not be prescribed Propecia so easily and drug producers should provide a clear warning about such dangerous side effects. I believe Propecia ruined his health, career and life. He was a happy, easy going, kind and caring teenager and Propecia has made him mentally disabled. I’m very upset and do not know what to do.

    GL, 62, Oxford, England: Aug. 3, 2018

    Condition update: September 2020

    No improvement

  • PFS Patient (male)

    I only have sexual problems.

    I have no psychological problems. No depression, no anxiety crisis. Nor do I have cloudy vision, or physical problems such as tiredness, weakness, or breast growth, I only have sexual problems. I do not know if such cases are normal or something rare, that is, someone to whom the postf-inasteride syndrome causes sexual dysfunction but not depression.

    FJ, 28, Seville, Spain: Nov. 21, 2019

    Condition update: August 2020

    Slightly improved

  • PFS Patient (male)

    This disease is a BEAST!!!

    Me and my brother are suffering from post finasteride syndrome. I crashed on 23.01.2014 and my brother in february of 2014. I knew instantly that I crashed and that i suffer from PFS because of studying on the Internet, reading about the progress of the syndrome and a few stories of patients that are identical to what I went through […] We are hospitalized in psychiatry because nobody believed us that we are suffering from PFS. In Croatia no endocrinologist or psychiatrist has heard anything about that disease. Before taking the drug we were extremely potent, endowed with a great sex instinct, completely healthy young people. The side effects are also neurological and mental. The worst thing is that our own parents did not believe us. They believe we are insane. They send us to psychiatrist who did not want to read anything about the disease because data are available only on the Internet. Parents want to throw us out of the house because we can not work. If we do not find support for this lack of understanding by doctors and parents this leads to suicide. WE NEED SOMEONE WHO BELIEVES US AND IN THIS DISEASE!!!!! This disease is a BEAST!!!

    BK, 35, Zagreb, Croatia, Oct. 2, 2014

    Condition update: August 2020

    Slightly improved

  • PFS Patient (male)

    Started with topical finasteride 0.1%… The worst is brain fog and depression.

    Hello I’m a 28-year-old male. Started with topical finasteride 0.1% fortified with 6% minoxidil. I have never taken the pill form of finasteride (propecia). I discontinued use after 36 days of the topical spray due to side effects. It’s been 3 days since discontinuing the topical Solution and I still have all the side effects. The worst is brain fog and depression. That really only started after discontinued use. What originally made me discontinue was erectile issues which started about 2-3 weeks into the treatment. I would like to consult with you about your experiences and how to overcome/get back to a normal and if it is even possible?

    BC, 28, Sacramento, CA: Aug. 6, 2019

    Condition update: September 2020

    No improvement

  • PFS Patient (male)

    I have muscular atrophy, fat loss under the eyes, vision problems, brain fog, insomnia, fatiuqe, depression, penile texture changes, numbness.

    Hi im from turkey and after 2 weeks proscar usage, i crashed. I have muscular atrophy, fat loss under the eyes, vision problems, brain fog, insomnia, fatiuqe, depression, penile texture changes, numbness. what am i supposed to do right now? is there any doctor take care of this problems in turkey? how i recover myself? please give me some advise and help.

    TE, 33, Adana, Turkey: July 12, 2016

    Condition update: September 2020

    Extremely bad

  • PFS Patient (male)

    brain zaps, sore and crunching joints

    — Length of time on finasteride: 4 days
    — When quit finasteride: March 2018
    — Persistent side effects: Bodily fatigue, vertigo, brain zaps, sore and crunching joints, derealisation, numb genitals, head pressure, squishy facial tissue, very poor stress response.

    JA, 34, London, England: July 9, 2020

    Condition update: October 2020

    No improvement

  • PSA

  • PFS Patient (male)

    I can’t remember a time when I felt happiness or joy for things I used to love.

    I’m a 57 year old man and my symptoms include: sexual dysfunction (no libido), erectile dysfunction (painful erections, and if I orgasm it’s without sensation–my new normal is a-sexuality), ejaculatory disorder with little or no ejaculate, shrinking of my genitals (they’re almost non-existent, and I experience sharp testicular pain that goes up into my lower abdomen/groin area), gynecomastia (including breast pain), and migratory joint muscle pain throughout my body. I can’t carry groceries anymore because of nerve and muscle pain, it feels like splintering sensations, like my muscle tissue and nerves are shredding and ripping. Also anhedonia. I’m often lost in brain fog and listless. I can’t remember a time when I felt happiness or joy for things I used to love. I have memory issues and I’m in constant fatigue and I am always depressed with suicidal ideation becoming common. I don’t recognize my life anymore.

    RM, 57, Winnipeg, Canada: July 12, 2019

    Condition update: September 2020

    Extremely bad

  • Mother of Patient

    He’d been using topical medications for 5 years and decided to try Finesteride. That was the beginning of a nightmare.

    My son was a healthy, smart ambitious 28-year-old man who was going back to school at Suffolk University with a 4.0. He also worked and was in fantastic health, climbing mt Washington in 4 hours for fun. He was, however, battling losing his hair. He’d been using topical medications for 5 years and decided to try Finesteride. That was the beginning of a nightmare. His sister was getting married Alugust 18th. 4 days before the wedding it started…muscle spasms, nonstop and severe anxiety. He had only been on it for 3 months. He immediately stopped taking it but it has continued for the last 5 months. Now though, he is in pain. He has been seeing a neurologist, and is convinced he must have ALS, although so far the tests do not point to that. He started seeing a therapist also hoping it was stress. But the pain and twitching and insomnia are real. He does not currently have any erectile issues thankfully but the physical and mental stress he experiences is horrible. He continues to search foir answers but i am convinced it is from the Finesteride.

    LM, Lowell, MA: Jan. 6, 2019

    Condition update: August 2020

    Slightly worse

  • PFS Patient (male)

    I am living now for seven years with my parents in their tiny apartment and do not know what to do.

    I am 35 years old and have this Syndrome since I have been 24 years old. My Life was smashed and destroyed after I started with Finasteride. I can’t stop thinking about this one moment I decided to go to this special Doctor who treats hairloss. I was 24 years young and I had full beautiful hair. This Doctor made some tests and scared the shit out of me my prognosing a full bald me in a few years. I trusted him and took the pills he gave me. Safe pills he said. No side-effects. Soon after I started the pills my life made a u-turn. I was finishing university and had already found a new job in a new city. That’s when I start to enter hell. I lost my mind and had the most disgusting mental health issues. I had to go to the hospital and started with suicide thoughts. It was an absolute nightmare! Fast Forward. I am living now for seven years with my parents in their tiny apartment and do not know what to do. I feel a bit better because I take a lot of different medications but I can not go outside or even read a book because I feel sedated. I really do not know what to do with my life.

    HH, 35, Stuttgart, Germany: Feb. 3, 2019

    Condition update: September 2020

    No improvement

  • PFS Patient (male)

    20 years ago, I began the Prostate Cancer Prevention Trial…Towards the end, I had already noticed occurrences of impotence but it wasn’t until the news came out that it might have been the finasteride that I put two and two together.

    Hello! 20 years ago, I began the Prostate Cancer Prevention Trial and saw it through to the end, about six years. Towards the end, I had already noticed occurrences of impotence but it wasn’t until the news came out that it might have been the finasteride that I put two and two together. Yes, I had been taking the real stuff all along, not any placebo. I have almost zero penile sensation today. Wondering if there’s any studies going on that would want me as a volunteer. Please let me know.

    BD, 74, Clearwater, FL: April 18, 2017

    Condition update: September 2020

    No improvement

  • PFS Patient (male)

    People are not aware in Latin America about the risks of this drug.

    I’m suffering PFS. I experienced only cognitive and psicologycal syde effects. This problem has affected my life in a way I can’t describe. I barely can work, I have lost my friends. It is really difficult to other people to understand this problem. I really would appreciate if, you have an advice of how I can deal with the social consequences of this horrible disease. I have written an article telling my experience. It will be publish in El Espectador, one of the most important newspapers in Colombia. People are not aware in Latin America about the risks of this drug. Apparently I’m the first person who make a research in Colombia and there is very few information about Post Finasteride Syndrome in Spanish.

    FR, 31, Bogotá, Colombia, Oct. 8, 2018

    Condition update: October 2020

    Slightly improved

  • Father of Patient

    all the joy has been taken from his life…he just wants to die

    My son, who is 37, is suffering from PFS. He took finasteride–only 3 doses–about a year ago. He was immediately affected both mentally and physically. Mentally, he has problems focusing and concentrating. Since taking finasteride he hasn’t read a book–though he’d been an avid reader. And he hasn’t written anything–though he had been an aspiring short-story writer. Physically, the finasteride has affected his libido and genitals. Since all the joy has been taken from his life, and he has no hope of recovering, he just wants to die–something he tells me and my wife nearly every day. I have many questions, but I’ll ask these two: (1) My son thinks the adverse effects of finasteride are permanent–hence his desire to die. Are you aware of anyone who has experienced the mental adverse effects of finasteride ever recovering? (2) Are there any recognized treatments for PFS? My son has seen a urologist (who has dealt with PFS ) who prescribed medications to affect his testosterone and DHT levels, but while the levels have improved, his ability to function has not. And yes, my son has seen 3 different psychiatrists and none of them have been able to help him. Thank you for any information (and any «hope») you can provide.

    DL, Warren, Ohio: Feb. 7, 2019

    Condition update: August 2020

    Slightly worse

  • Mother of Patient

    24 hours after the first missed dose he began experiencing extreme depression, panic, vomiting and dry heaves.

    My 19 year old son took Finasteride for one week and stopped because of depression and suicidal thoughts. 24 hours after the first missed dose he began experiencing extreme depression, panic, vomiting and dry heaves. How long are the withdrawals for someone who has only been on the drug for one week? Thank you.

    CD, St. Louis, MO: March 12, 2018

    Condition update: August 2020

    No improvement

  • PFS Patient (male)

    I’m afraid…I will live the rest of my life in celibacy.

    Hello: I used finasteride for some years, and while I eventually did notice smaller libido, I was assured it would return to normal if I stopped using it. So I continued till I one day realized my libido was practically gone, and I had to face the reality. Since I’m single, I had no partner that could tell me what was happening, so it continued longer than it normally would. Hair or not, there would be no idea to trying to be more attractive with more hair if there was no libido. So I stopped using it, and that was more than a year ago. And everything still feels dead. […] I’m afraid it has affected me permanently, and I will live the rest of my life in celibacy. Obviously I can also forget to ever find a girlfriend if nothing changes, and therefore no children or family.

    TH, 33, Stavanger, Norway: March 28, 2017

    Condition update: August, 2020

    Considerably improved

  • PFS Patient (male)

    This pill has completely destroyed my life.

    I am a 25 year old male suffering from Post Finasteride Syndrome. I took a single 1mg pill on October 23rd, almost 8 months ago and I have progressively suffered severe side effects. I’ve suffered significant cognitive impairment since the first day, progressive muscle wastage, and now complete feminization/aromitization of the body. I went from a muscular, healthy young man to completely destroyed and barely can climb a set of stairs without being out of breath. I have suffered a complete shutdown of my metabolic and endocrine systems. This pill has completely destroyed my life. I have studied the past 5-6 years to be accepted into a Doctor of Physical Therapy program, and now that I am enrolled I can barely maintain my studies; I fear I will be dismissed from the program as I am simply not able to keep up physically or mentally. I am reaching out to both you and Dr. Santmann in hopes that you will do all you can to discover a treatment for this disease, and to banish this drug from the market […] Please continue to spread the word about this disease to get this drug banned from the market. There are so many men who are depending on you.

    DK, 25, Dahlonega, Georgia: June 15, 2019

    Condition update: August 2020

    Slightly worse

  • PFS Patient (male)

    I’m so lost and I don’t want to die because of this!!!!

    Hi […] I took finestride around the end of 2013 or early 2014 on and off until 2016 for hair maintenance treatment. The reason I stopped in 2016 is my wife got pregnant with our son who’s now 11 years old. I am terrified that I have passed some side affects of p.f.s. onto him as his Penis is only about 1 inch in flaccid state, I really hope and pray he will be normal and have a normal puberty and sexual function in his life. Do you think its possible it could be passed on by me. Since I stated finestride years ago I gradually lost nearly all penile, anal, prostate and testicular sensation, the right side of my penis seems smaller than the left, I have vision problems and tinitus sometimes, anal itching, memory problems, brain fog, tooth decay that seems to start inside the tooth rather than on the outside. Loss of nocturnal and spontaneous erections, penile numbness. Intestinal problems such as discomfort and bloating all the time. Chronic fatigue which I feel is caused by the intestinal problem. I was always a little prone to depression and anxiety but since I have p.f.s. It’s so much worse and since my marriage breakup I now have more and more suicidal thoughts. I’ve been trying to stay positive but lately I am losing hope, I see nothing about a hope of a cure on the Internet. And doctors here don’t even recognise the syndrome […] I’m looking for your help and for some hope because I’m so lost and I don’t want to die because of this!!!!

    JM, 41, Leitrim, Ireland: March 2, 2018

    Condition update: August 2020

    Slightly worse

  • PFS Patient (male)

    I decided to restrict myself from masturbating and pornography, as I believed it was causing my problems.

    I started taking finasteride during […] 2016 to prevent hair loss […] Because of side effects like painful testes, poor concentration and decreased libido, I stopped after a week. I did the same thing a month or so later, stopping again because of side effects. In the following months, I experienced some side effects that might have been due to finasteride, but at the time I believed they were from excessive masturbation. Those were softer erections, a slight deviation of the penis to the right and lack of libido. The worst happened in July 2017 […] At the time, I decided to restrict myself from masturbating and pornography, as I believed it was causing my problems. After a few days, my penis had shrunk in the flaccid state, and was strangely rigid. I also lost my nmorning erections, but during daily erections, my penis still seemed normal. At first I paid no attention to this, but then I noticed the glans of my penis becoming cyanotic at the edges, and I began feeling pain. I also had horrible pain in my penis and perineum, and the blood vessels on my penis became rigid. After that, I had my testosterone measured, I saw a private urologist who assumed I had Peyronie’s, a public urologist who said there was nothing wrong with me, a radiologist who performed an ultrasound during the flaccid and erect states and said she saw no evidence of Peyronie’s, but saw some thrombosis in blood vessels. Then three more urologists, two of which said I likely have Peyronie’s, and one who didn’t believe me […] Until recently, I thought my symptoms were improving: my testes and scrotum became less shrunken, my penis became less rigid and hard in the flaccid state, my erections improved, I mostly stopped feeling pain in my penis, testes and perineum (except after ejaculation). However, I recently noticed that my ejaculate quality has become worse […] I also noticed some improvement of psychological symptoms, but I still frequently have depressive thoughts, thoughts of suicide, I am apathetic, I have a hard time concentrating and sometimes even speaking and remembering simple words.

    ZV, 25, Ljubljana, Slovenia: Nov. 24, 2018

    Condition update: October 2020

    No improvement

  • PFS Patient (male)

    I’m completly devastated and considerating to end my life.

    Hello, Dr Phillip Roberts. My name is Antonio, I’m a 25 years old brazilian who has gone to throuth a transformation from being a happy young man to a walking corpse because of two pills of finasteride. I do feel my health quickly degenerating over the days, with no improvement at all. Righ now my worst syrmptoms are mental problems (amnesia and brain fog), dry eyes and mouth, excessive urination, prostate pain, diffuculty sleeping, weight loss, muscle spasms (mostly in my legs), a pain on the back of my head everytime I workout and more I can’t remember right now. I’m completly devastated and considerating to end my life. I heard about your study at propeciahelp.com and it was a light at the end of a tunnel. I would give up everything I doing right now to fly to the USA and participate the study. I really hope that you can come up with some kind of solution to helps us all.

    AD, 25, Macapá, Brazil: May 1, 2015

    Condition update: August 2020

    Vastly improved

  • PFS Patient (male)

    Unfortunately, nothing I’ve tried has yielded positive benefits, and so I’m at a loss on how to move forward.

    I am 20 years old and developed a relatively severe case of PFS in the summer of 2015 after taking about a week’s worth of pills. My symptoms include debilitating brain fog and cognitive shift, muscle atrophy and weakness, fatigue, low mood, low energy, many sexual symptoms (although these are the least of my worries due to the severity of other symptoms), low body temperature, and some others. Unfortunately, not much has gotten better for me as I approach 1.5 years off Propecia. I live in New York City and attend NYU for finance. I have tried a number of therapies under the supervision of Dr. Jacobs here in New York as well as my father who is a gastroenterologist. We have been very careful and considerate in the things that we have tried, and I always take an unbiased perspective to limit any placebo effect that I might be experiencing from these therapies. Unfortunately, nothing I’ve tried has yielded positive benefits, and so I’m at a loss on how to move forward. [… ] I am oftentimes very doubtful of the future.

    BL, 20, Manhattan, NY: Dec. 18, 2016

    Condition update: August 2020

    Slightly improved

  • PFS Patient (male)

    I felt memory loss, depressed, I have entrance exam for mbbs and my family is so much hopeful and my ambition is lost.

    I took it for a year I had lowered libido and emotional levels were down then for 3 months I stopped it and it was quite fine but I used maybe pills for another 2 weeks. Suddenly I felt memory loss, depressed, I have entrance exam for mbbs and my family is so much hopeful and my ambition is lost. Plzzz plzzz help me. Please understand my mother has worked so much for me, my father left us when I was in 6th grade. She had to look up for 6 children, and for me she gave me the best education possible, and I was so much ambitious, I wanted to pursue my career in foreign relations and make that hope come true which I see in my mother’s eyes when she looks at me. I wanted to contribute to humanity, for children like me who are betrayed by a family member.

    AM, 17, Indore, India: July 27, 2017

    Condition update: September 2020

    No improvement

  • Mother of Patient

    My 14-year-old son was prescribed finasteride by his dermatologist and I have witnessed increased symptoms of depression in him to the point that he is barely functioning.

    My 14-year-old son was prescribed finasteride by his dermatologist and I have witnessed increased symptoms of depression in him to the point that he is barely functioning. Also some cognitive changes such as short term memory impairment, inability to focus, extreme tiredness, He is now 15 years, and been off the drug about 1 1/2 months. He was on the drug about 6 months with 2 months off during that time frame. Found much info in my research on what could have brought about the changes. My main question is there any information as to what it does to boys his age and how long may depression and cognitive changes persist. I do not want to introduce another drug into his system at this point but he may need it.

    GM, Ft. Lauderdale, FL: Feb. 19, 2014

    Condition update: January 2020

    No improvement

  • PFS Patient (male)

    Does this mean my side effects are permanent?

    I’m having some bad reaction to the drug called finasteride. I took 0.25mg for 8 days. After quitting I started getting very mild pains in the scrotum which I didn’t pay much attention too. I read the side effects online and quit the drug. Since I quit I have been having terrible pain in my scrotum and the urgency to frequently pee. I went to an urologist here and he prescribed me Celebrex200 mg once daily and Taravid tablet twice. I have been having this meds 2 days but the pain doesn’t doesn’t stop. My penis while standing feels shrunk and stiff almost like rubbery. I haven’t been able to have an reception or ejaculate since 3 days. My testicular pain started after I masturbated. After that in a few hours I was sleeping and ejaculated in my sleep. Since then I feel terrible pain in my scrotum and penis. I have tried 1 or 2 finasteride pills in August leaving gaps. I was fine then so I initially I tried talking to the doctor here but I don’t think they have much idea. Do you know anyone in the urology department who can help me with this? Does this mean my side effects are permanent?

    AS, 22, Bangkok, Thailand, Sept. 19, 2019

    Condition update: October 2020

    Slightly worse

  • PFS Patient (male)

    I cry more. It’s like I’m in a fog. Went to the hospital today because I didn’t know where else to go, only to be told that PFS does not exist.

    I have been taking finasteride 5mg orally daily since 2017 for benign prostatic hyperplasia. The depression got to be too much so I stopped taking it 12 days ago. Now I’m going through intense depression with new onset of panic attacks and anxiety, rash, palpitations, sexual problems. Today I felt as if my world was over, like a pinnacle of a roller coaster of emotions I’ve been going through. I cry more. It’s like I’m in a fog. Went to the hospital today because I didn’t know where else to go, only to be told that PFS does not exist. And that I need counseling. I’ve never contemplated suicide before today and it scared me. I’m glad you guys exist. I’m ok for now, only because I understand what’s going on.

    EB, 49, Phoenix, AZ: Feb. 13, 2020

    Condition update: October 2020

    No improvement

  • PFS Patient (male)

    How on earth is this tablet still out there?

    My brother and I recently started taking Propecia. After a month my brother began experiencing side effects (depression, sexual etc.) Upon hearing this I stopped and immediately got total sexual side effects mixed with depression. I’ve gone to see 3 doctors, 2 of which didn’t really believe in it and the third told me to wait 6 weeks. After about a week I made a decent recovery then things started to get worse and now I’m almost back to square one. It’s been about 4 weeks and I’m getting desperate. I’ve read your website and appreciate what you’re doing but I want to really find out how many people is this permanent in percentage wise? How many people have recovered? All I read is negative stuff and although this works to raise awareness it’s very distressing. I know there’s no cure but what has helped — exercise, certain tablets, foods etc.? Doctors just say to me, «You’re young, wait and we’ll see» so I’d appreciate some honest advice. How on earth is this tablet still out there?

    AB, 25, George, South Africa: June 27, 2020

    Condition update: September 2020

    Slightly improved

  • PFS Patient (male)

    A few days after I stopped taking it I started experiencing muscle spasms, weakness, numbness and pain in my right arm which eventually spread to my entire body.

    I was on finasteride for about 3 months and I cut it off completely about a month and a half ago when I noticed some pressure in my chest. A few days after I stopped taking it I started experiencing muscle spasms, weakness, numbness and pain in my right arm which eventually spread to my entire body. (That is still happening). I have not experienced any suicidal thoughts but my anxiety and depression has skyrocketed during all of this. My libido is completely gone (although it may just be because I can’t seem to focus on anything aside from getting a diagnosis). I have been to 6 different doctors (including 2 different neurologists) and none of them can explain to me what is going on. I feel like I am at a dead end and am looking for a direction to manage this.

    LM, Dallas, TX: Aug. 2, 2020

    Condition update: August 2020

    Slightly worse

  • PFS Patient (male)

    I have a girlfriend who loves me very much… there is still no sexual relationship, so she doesn’t know I have pfs.

    I have stopped taking this drug for two years since 2016. Since I don’t know pfs, I have been to a lot of good hospitals and have consulted a lot of doctors but they can’t help me. My family spent a lot of time and energy and nearly 10,000 dollars but didn’t have any help. When I accidentally saw a video called Unprotected Side Effects in China’s Youku video, I was able to content two pfs patients here. I finally know what happened to me. After experiencing the idea of ??suicide for a short time and the self-defeating psychology, I quickly calm down […] but I still face a big problem: I have a girlfriend who loves me very much. We have been together for a long time but because I and she are both Very traditional people, so there is still no sexual relationship, so she doesn’t know I have pfs.  My parents don’t know. I don’t know if I should tell them or just add pain to them […] Chinese doctors and even patients who have had persistent side effects after taking finasteride do not know pfs. Because Chinese networks are restricted Chinese patients are not easy to browse pfs website.

    JZ, 22, Zhejiang, China: Dec. 10, 2018

    Condition update: March 2019

    No improvement