Post-Finasteride Syndrome: Luis' Story

Luis shares his experiences taking finasteride, a drug marketed to young men for male pattern baldness, and the persistent symptoms he suffers after cessation.
Post-Finasteride Syndrome is the current term for a rare syndrome of devastating physical, neurological, and sexual health problems that persist and progress after stopping finasteride. The condition occurs primarily in younger men who have taken the drug to treat hair loss. There is currently no effective treatment.
PFS network is the largest patient-led organisation. Our objectives are to raise awareness regarding this devastating condition and support molecular-level diagnostic research in PFS patients. This will enable effective screening for those predisposed to this debilitating condition, and therapies for the many already suffering.
These serious and stigmatising adverse effects are poorly recognised. Young people cannot give an informed consent without knowing what they are risking.
Every person is valuable, and everyone deserves to make a fully informed choice with their health.
Please visit pfsnetwork.org to for more information, and subscribe to our channel for patient stories and content regarding PFS.
We thank you for your empathy and support.

[@MT-nu3vl]

You are incredibly brave. Thanks for speaking out

[@trickymorton6994]

Thank you so much Luis for speaking out.

[@balajiyashwanth784]

Same story luis, i used topical finasteride for 6 months and i had many of the symptoms(brain fog, insomnia, lack of focus, anxiety, depression) you listed in the video, so i stopped using it, hope we can get through this together My suggestion to everyone out there is never ever consider finasteride as an option for hairfall treatment

[@drwayne_carter9115]

Did you have a crash? Did you taper the dose? Or cold turkey?

[@gangs0846]

Update?

[@CryptozillaKH]

Thank you for fighting publicly for the whole community. All the best to you!

[@thebluethunderbunny2324]

Thank you for sharing your story. I was hesitant to get on finasteride, and doctors always tell me about how stories like yours are rare, and they encourage me to get on it anyway. I don't believe them. I feel like this happens a lot more than people talk about, but I feel like most guys are embarrassed to talk about it. It's also amazing how doctors don't give a damn about the damage that's done by their own influence after people get on these drugs.

[@raizox6134]

@@adaptful statistics are based on test patiens’ testimonies. If the researcher asks them if they have sexual side effects and say they don’t even they have them, on the paper it will be informed as the test patient does not have side effects. So they question is, why would someone lie on this? Well, it may surprise you how many people are embarassed to even tell a doctor that their penis cant get a bone.

[@MikeL0084]

@@adaptful If it were such a "safe" drug the FDA wouldn't have made Merck add to the drugs own LABEL that sexual side effects may persist even after discontinuation of use. And no I don't want to hear that they were only forced to do that because of some lawsuits. Well, enough lawsuits were filed and enough noise was made that the FDA took some serious notice. You have to respect that no matter who you are or how you feel. Sure you are very right that for the millions of men who take this with no problem they aren't going online talking about it as much as the guys with sides/persistent sides, but that doesn't change the fact that the latter is very much real and has been proven to be real for quite a number of years now. Merck will never be forced to pull Fin from the market as these PFS cases are so rare, but many of them are real imo. Vioxx was different story, and as you know that was pulled.

[@anonymousse7054]

Hello Luis, thank you for your courage in coming out and talking about this horrible condition. You are not alone. I have also had horrible sexual side effects ever since taking Finasteride in 2019. I took the drug for one month and I stopped taking it when the side effects appeared. The side effects have never gone away. I applaud your incredible courage in talking about these things in public. Take good care of yourself and stay hopeful. Thank you.

[@kc587]

Thank you for sharing your story luis - very brave of you!

[@waqaskhan217]

Hang in there brother. You are not alone. May GOD have mercy on us. I just hope we dont have to wait our entire lives in the hope of an effective cure.

[@DT-et8vk]

Thank you for your courage and for speaking out.

[@TheRealAIhundo]

Thank you for bringing awareness to PFS

[@damonkize]

Thank you for speaking out. We need more exposure and recognition for this condition.

[@johnbryan3513]

Luis thank you for sharing your story. You are saving lives with your honesty. Will be shaving my head soon, won’t touch this nasty drug.

[@poostenbrug3053]

Thanks for letting your voice hear!

[@elio2320]

Thanks for sharing brother. Personally I took half a pill three times a week for a month and got PFS that lasted three months. I'm lucky that it didn't last long but I feel ur pain brother.

[@marksmith-ri5ur]

What were your symptoms?

[@abhishekkumarverma1766]

What medication you take Or you well now

[@yeraygonzalez4904]

Hi. Could you please let us know if you had a progressive evolution? One month after quitting I have had zero progress (I am perhaps even worst), so I am scared that this dreadful drug ruins my life forever

[@cesar_crash]

any update? ​@@yeraygonzalez4904

[@jsanders893]

Another victim of Finasteride here. Took the drug for one 1 year. It’s been 1 year since I quit and my libido is nowhere to be found. It truly destroys lives.

[@alby0201]

Did u have anxiety at all? My anxiety is thru the roof after 1 year on fin

[@Vectorman2X]

@@alby0201 i got anxiety and social phobia from this shit

[@tired_of_everything0]

​@@Vectorman2Xdid they go away

[@OGAesthetics]

Update??

[@yongo1304]

Maybe the problem wasnt the finasteride then

[@Dexter77976]

I was considering to take Finasteride thank God I found this Videos. This Save my Life. Hope your well soon.

[@gjujhfgtjjjjjjjjjjjjjjjjjj3603]

Same. I was scared to take it first, then i saw this guy full head of hair and i finally decided to hop on it.

[@NN-sp9tu]

@@gjujhfgtjjjjjjjjjjjjjjjjjj3603how is that going. Any sides?

[@anurag.twentysix]

@@gjujhfgtjjjjjjjjjjjjjjjjjj3603 did you watch the full video?

[@Aman-gc3it]

@@gjujhfgtjjjjjjjjjjjjjjjjjj3603😂😂

[@AC-ns4gu]

Thank you for sharing your story. PFS is a horrible condition and videos like this help spread awareness.

[@E10l]

My only symptom was brain fog. My memory was affected. I stopped taking it a few days ago. I took finasteride for autoimmune disease scarring alopecia lichen planopilaris. I took 3mg. In the research they took 2.5-5mg per day. its effective stop the disease. Its sucks that the drug can help my disease have these side effects😭

[@tired_of_everything0]

​@@E10ldid they go away

[@husainismaeel2981]

Luis, you are brave! Thank you for speaking out on behalf of many who are probably suffering in silence. I, too, took this pill for five months and got most of the symptoms you mentioned. It's been four months since I quit. I'd say the cognitive sides are gone but not the sexual. Would you mind sharing the contact information of the doctor treating you, and telling us whether the treatment is working? I hope you get well soon, dear. ❤

[@justhyped9933]

Hey! I'm happy that there is someone who has exactly the same issue as me. I took it 5 months as well and the sides didn't go away since two months How does it look like for you after 6 months?

[@dennybrockmann9005]

@@justhyped9933 any update bro?

[@adamcruz3012]

Gracias por compartir tu historia, hermano. Queda fuerte y seguir adelante.

[@TrickGas]

Thank you for sharing Luis, I hope you found Solace

[@Lazurath101]

Hey Luis. Keep soldering on brother. I have PFS too and it’s fucking awful. We’ll get through this together.

[@anonymuz7791]

donate to PFS network . Their research progress and human trial right now

[@kathleent1085]

Thank you for sharing your story

[@mitchsabine4248]

Thanks for sharing your story Luis. It's important we all start to speak out about this devastating condition.

[@georgerhodes6129]

Thank you man i live 10 years with this disease

[@TuranUlkucuGenc]

What’s ur sides

[@tired_of_everything0]

what!

[@SeanSean-jp9hg]

@@tired_of_everything0yes what it’s permanent condition, no cure

[@anurag.twentysix]

10 years? Oh man.

[@hannesbolman4710]

I am thinking since long to take the stuff. Those Storys keep me from doing it. I hope your Situation improves soon!

[@husainismaeel2981]

For the love of God stay away from this poison! I took 3 pills/week for five months and had the same sexual and cognitive symptoms he mentioned. It's been four months since I quit and although the cognitive symptoms are gone, the sexual ones still exist.

[@Xtramedium1961]

I’m on it for a decade saved my hair and no sides, lift weights 3days a week. 1.25mg every other day. Focus on the positive not the negative you’ll be fine. I believe this guy and just think he was unlucky and I hope he gets better

[@Maxxxim1]

@@Xtramedium1961 The thing is you don’t know if you are predisposed to it beforehand. I crashed after 6 months, some after 1 pill and some after years. Why does that occurs ? The Baylor Study found thousands of changes in genes expressions and it confirmed us that it isn’t a hormonal issue. Don’t expect being healthy to avoid sides. There is clearly something we don’t comprehend with this drug

[@shanefolan9175]

@@husainismaeel2981 update?

[@husainismaeel2981]

@@shanefolan9175 No improvements at all. Not sure what I should do next.

[@ardalannoajnas6784]

You are a very strong person Luis. Thank you very much for stepping forward and informing us about your condition.

[@toevlierpanosh6392]

How did you ever decide to take finasteride with a massive tower of hair like that?

[@anonymousse7054]

There are a number of reasons why a person might still make such a decision even with a head of hair: 1) Finasteride is marketed to young guys who are encouraged to start taking the drug to *prevent* hairloss rather than cure it after the fact. 2) Some people have a genetic family history that make it very likely that they will be next, so they try to be ahead of it. 3) Some people have a more diffuse type of hairloss or only hairloss on the back of the head, which you might not be able to see in this kind of video.

[@DTOLL9000]

The whole point of taking it is prevention of further hair loss, I have the same amount of hair as this guy but I won't in 10 years time without finasteride.

[@Maxxxim1]

His hair is combed forward. His temples could be thinning you wouldn’t know

[@maxbrown1064]

You’re a brave man Luis. Hang in there.

[@juliannewman8720]

How Luis, how are you doing now?

[@craigcapers]

Hang in there mate, we'll get through this.

[@elwayen20]

I'm Sorry man, suerte en la recuperación!

[@so14075]

thanks for sharing. hope you get better and return to normal eventually. i tried it for a week and had severe brain fog, lack of motivation, difficulty concentrating, forgetfulness and difficulty sleeping. just hated life overall. can't imagine that feeling lasting in perpetuity. this stuff is way too risky and poison for a lot of men.

[@tired_of_everything0]

hey did you recover from it

[@so14075]

100%. symptoms went away after a few days. some say stick with it and the symptoms will pass as your body adjusts but that's kind of risky

[@tired_of_everything0]

@@so14075 it's been 4 days I feel like I've a dead penis. Can't focus etc. I only took 2 pills. did you have the same

[@Vectorman2X]

I have pfs from 2006.I am still fighting to find a way out of this,i am so tired,but i must fight till the end,not only for me,but also for my brothers who suffering this poison.Please if anyone find something post it everywhere.I herd some stories that proviron or hcg cure this hell i dont tried it yet,but my next regime will be those 2.

[@Slidehhy]

How are you now

[@waqaskhan217]

Its like a nightmare in reality.

[@danielbryan7619]

What is it like?

[@alexanderbreschi90]

What are you doing to get better and what is helping?

[@Vectorman2X]

The picture of the thumbnail of the video i bet is before pfs,the guy was a total different person before

[@GerardoTonella]

Hola Luis! Muchas gracias por compartir tu historia. Yo tuve un caso similar, y a veces no me la creo pero me gusto mucho escuchar que no estaba solo (aunque también me asusto). Espero que te sientas mejor. Me encantaría platicar más contigo. Gracias 🙏🏼

[@OscarPerezPousada-sn2do]

Damn, I'm so sorry man.

[@kelseymj1975]

This is just an observation but in listening to several of these stories. I’ve noticed that the guys telling their stories (thank you by the way for sharing) are pretty young guys with little to know visible hair loss, at least from the distance. Being that these AR inhibitor drugs were initially designed for prostate health, which usually effects older men than the ones I see suffering from PFS, maybe there’s something about taking these drugs before a certain point of hormonal maturation? Or simply taking the drug for something not needed (since hair loss is sometimes linked to enlarged prostate)? Thanks again for sharing your story, I hope you find a successful treatment(s).

[@MT-nu3vl]

I hope you are feeling better these days Luis

[@Excaliburhope]

How is he now? Did he get any recovery?

[@ahmet-hd2yn]

What is the most effective treatment method for this problem?

[@Xtramedium1961]

Been on it for a decade no sides and it saved my hair I’m 59, but after listening to you I’m nervous about continuing , so sorry for your situation PS you have good hair why did you start in the first place?

[@Josh-c5k8q]

If you’re not having any issues after 10 years you’re probably good.

[@pitbullsami8475]

Update ?

[@espanol7133]

I'm far from being a doctor, but just a bit common sense, if you are 59, and you're taken it for 10 years, I would suggest you to continue taken it. Reasons: 1) Maybe discontinuing the drug could cause you a hormonal disbalance. 2) You could recover your hair. I never took it, I just prefered going bald naturally, but this kinda videos are good for taking conciouss of the risk that we are exposed to. Just my humble opinion to add up.

[@jeysmith7445]

I hope you recover your life one day Luis We are on same boat

[@zoy13]

For how long have you taken finasterine

[@Slidehhy]

How are you now

[@ed5616]

Do you still have the veins, I also have it

[@eyyomama]

im so afraid. ive been taking finasteride for 10 years now and im so worried what will happen when i stop taking it sometime…

[@wolves1980]

Tha say your hair falls if you got male pattern baldness when you stop. why don't you try topical finasteride and minoxidil

[@miguelalejandro4357]

I’m taking 5mg of Finasterida for only 2 months for prostate problems … I’m on day 35 of 60 The side Effects will Be gone after I quit The medication

[@sciexdeus8687]

keep it up my friend...and all who has the same problem... i have the same problem too.... only God can help.... for me He is the best support ever(family and friends too)...i took 12 pills and now i'm one month and a half out of the drug and i yet have sexual disfunction, brain fog, emotion lack, and i think i get worse after i stopped the pill...god have mercy on us all...i wish you the best...none of us should give up.... i will pray for all of us

[@yeraygonzalez4904]

Hi, could you please update your status? I've been already one month off the drug, and I still have symptoms as bad as the first day. It really gives me hopes to hear that some people recovers within the 3 months time frame prior to be considered as PFS affected.

[@sciexdeus8687]

@@yeraygonzalez4904 first of all i hope you get better because its different from one person to another...me personally 8 months ago i was in a terrible situation. i felt like the hell has come for me i cant discribed it in any different way , but a lot of things got better brain fog is enough decreased, but im not as quik in thought as before. i still forgetting things and i lose my words sometimes, but only me can realize that,people think that im not a good speaker, sexual disfunction is also better but again not as before, im too far from what i was before...i tryied to perform with a girl she didnt realized anything wrong but i wasnt my self i didnt feel much pleasure as before. generaly anhedonia is still there and i think that this is the problem.because anhedonia causes the lack of emotion, motination and sex drive...you have to wait because i did get better three months later but not much better...im now almost 9 months out of the drug and im better than three months out of the drug...so you have to wait i know how it is you feel like hell unleased upon you but you have to wait...god be with you

[@confusedalex5612]

​@@sciexdeus8687brother, don't worry the finasteride is out of your system. A lot of the things you say are only in your head

[@abhishekkumarverma1766]

I know your problem Because I am also have PFS But the neurological physical side effect is all gone

[@domienballegeer5943]

What problems are stil occuring with you then?

[@abhishekkumarverma1766]

@@domienballegeer5943 I am good now but psychological ed is still which is not bad as earlier and headache is gone

[@carsonlanning1485]

I took it for 2 weeks and stopped. I didn’t see any side effects. Will I be good or am I affected forever?

[@Thugzzzyyy]

Stay away from this drug.. you are lucky . The thing is, you can not know when the bullet is going through . Stop playing Russian roulette

[@solsesolse2022]

Si estuviese traducidó al español, lo podríamos entender todos los que vemos este video.

[@oyaml1211]

What did you do to avoid hair loss if you stopped taking finasteride?

[@shahrukhraja73]

Same question. But sadly they will never reply. First they will spread fear inside you but when it's come to solution ,no one will come .

[@voiceofsoul2914]

Thanks for awareness plz don't take this poison hair is not important than your sexual life.

[@dennisduran8500]

Why do so many people take a drug with known side effects?

[@Vectorman2X]

Because they are not informed about this situation,the side effects in most cases are persisted.

[@Maxxxim1]

PFS isn’t something doctor believes in. And except for the sexual one the notice doesn’t include the hundreds of possibles weird sides

[@confusedalex5612]

​@@Maxxxim1pfs doesnt exist, the drug has been out for twenty years before the first pfs was recorded

[@samygomboti348]

My testicules go crazy from finasteride & dutasteride Doctors say i have prostatitis cronic But in 2013 i took this drugs Im in permanent pain until 2015 from now

[@dennisduran8500]

He has hair loss? WTF! Did Finasteride give him that head of hair. WOW!

[@jamie0008]

Exactly my case

[@dario4177]

These drugs are really dangerous..too many lives destroyed

[@dario4177]

@@ali09gaming58 unfortunately there are people who got sick due to minoxidil... currently there aren't markers that could predict if you could develop or not this condition

[@minepolz320]

PFS is real PSSD is Real PAS Is REal!!

[@boxingwatcher9924]

Instead of making these bland videos let’s see the blood work and what you’re doing to mediate some of these side affects ? meditations , hormone therapies ? We need more information than everyone just sitting around telling us what happened with no futher info

[@williamassaly1356]

They can't give medical advice on what they are doing because there are no known treatments for PFS, there are some anecdotal evidence of people recovering from low dose HCG and sometimes TRT, but it doesn't always work and sometimes people can even worsen. PFS isn't really well understood because there isn't enough science to understand it yet. We don't have the kind of funding that pharmaceutical companies have to make high quality studies and there are no financial incentives in studying it so the problem still remains a somewhat medical mystery. As time passes and as more and more people complain about it, eventually we will have more research done(Hopefully) and understand it better.

[@PatoValencia789]

They cannot provide that because PFS doesn't exist. All is because of nocebo effect

[@puffybuns2311]

@@PatoValencia789 nocebo for how long. 9 years and still suffering.

[@marcomarchi2333]

​@@PatoValencia789 Your comment is extremely inappropriate given the suffering of countless patients affected by this poison.

[@confusedalex5612]

​@@PatoValencia789true, to be honest the fear mongering and placebo is insaneeeeee in here