Post-Finasteride Syndrome: Ryan's story
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- Опубліковано 5 жов 2024
- Ryan 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.
Thanks for speaking out. You are incredibly brave.
Thank you for your courage to share this terrible syndrome.
Ryan, you are strong as a rock. The fact that you have chosen to speak out about your condition just shows how strong you are. Respect.
Thank you for your time and courage in speaking out Ryan. You are not alone! I also have had persisting side effects for at least 1.5 years. I don't wish this on anyone. Take good care of yourself!
have you recovered now?
@@ThePrashanth66 Nope.
@@anonymousse7054 what side effects? I'm using only minoxidil now, thinking of startng finasteride
@@ThePrashanth66 Loss of libido, No pleasurable sensation (genital numbness), difficulty getting and maintaining erection, Low semen volume, watery semen, testicular shrinkage, prostate discomfort. Been dealing with this for a long time now and it does not seem to get better with time.
@@anonymousse7054 hi i have a family member who is desperate to take propecia , ive shown him alot of these vids to make sure he doesnt take this poison but he doesnt believe any of it .
This shrunk your testicles as well ?
I was just on the edge of buying fin... I don't think i could do it to myself now and still say that i love myself. Ty for this Ryan
You have dodged the most unbeliably painful condition I could ever imagine. NEVER take this drug.
Thanks for sharing your story Ryan. I hope things get better for you and all those those who are suffering
I'm sorry this happened to you. I appreciate you speaking out. Thank you!
Have to thank you for speaking out. This takes tremendous courage!
Thank you for speaking out and sharing your story. Finasteride has destroyed many lives, including mine. We have to continue to spread awareness.
Feel sorry for u bro...Hope things get better, God bless 🙏...how long it takes to destroy a life?...i was about to take it , i am only 22 yo :(
@@fraooqkhan2293 I took it 1 time. That's all it takes in some cases, unfortunately.
@@damonkize 1 time like how many doses bro?..for how long ? And after stopping the drug how long has it been with PFS?...it will be a favour to be enlightened..Thanks
@@fraooqkhan2293 1 time, 1 dose. My skin thinned, hair turned dry and coarse, muscle wastage, structural changes to genitals, anxiety, depression, derealization, exercise intolerance, watery ejaculate, unrefreshing sleep, changes to body hair.
I've had PFS for 3 and a half years.
This all got much worse after taking an antidepressant (Lexapro) for 3 days in April of this year.
@@damonkizeare you doing better or do you still have pfs? I took finasteride for 8 months and im worried I have pfs.
I had ordered it and opened it and it sits in my bathroom. There is no way I will use that poison now. Thank you. I am praying for you.
I had a topical solution and poured it out
Huge respect and thanks for speaking out Ryan! This community needs more brave men like you. I hope one day everything will be all right again for you.
Respect for speaking out!
Same situation here. Hang in there. Thanks for sharing!!!
Have you had muscle loss? Did it stop?
@@ihavePFShave you tried opaite therapy. Its all about dependent then withdrawal. Its the painful brutal withdrawal that foced my brain to find a homeostasis.
You are brave, thank you !
Thanks for sharing your story.
Thank you Ryan! Your dedication to spreading awareness for this devastating condition is second to none.
epitome of a warrior. keep fighting brother, you deserve all the wealth in this world, and so much more.
Thank you so much for sharing your story
Thank you for sharing your important story Ryan.
Hang in there Ryan. I hope it will get better for you.
Thank you so much Ryan for sharing your experiences of how propecia has decimated your life. You speak for many, many men out there.
I think it's difficult for anyone that hasn't experienced this to relate. I went through much of the same with this medication but in my case, the onset was pretty rapid so I knew what it was and I stopped right away. The effects still lasted for a couple years after but they were everything you described. Your life becomes a form of steady torture. It is horrible.
Are you still suffering from this? I took one pill and I’ve had awful side effect for the past 3 months, have no idea what to do it’s destroyed me.
@@naftalicoan9651 Nope, This happened to me in 2014. Like i said it took a couple years to be out of the woods. I took it for 3 weeks at 1mg before the problems kicked off. I know of others that experienced issues with just one pill. Hang in there the first year is the most difficult.
@@JB-yh8so Can you please name the physical side effects you got from it? Did it recover also?
Have you had muscle loss? did it stop?
@@ihavePFS I did, its been eight years post crash and all that is behind me now. I can gain muscle just as I did before. I opted for hormone treatment because one year into that disaster my T levels had dropped below 200. I did not bounce back quickly, some people have the misconception that you can try TRT and if it doesn't work jump back off. In my experience you have to be on for a long period of time, adjust your dose until you find the sweet spot for you. Then after months of being on it you should see some results. That said I am aware of people that say they have given this a solid try and it didn't help them. I think based on the current studies we all know there are other things going on with PFS. So my heart goes out to those who continue to suffer. I hope we find more directed treatments for them soon.
Hey Ryan. Hang in there man. I’m 27 and going through the same bullshit you are. Thanks for speaking out, we need to stick together.
I feel sorry for u bro, hope u recover soon....i am 22 and balding, they say it happens to only 1 percent people , i am so depressed and confused, either to take it or not.For how long did you take this drug and how much dose? It will be a favour to be enlightened 🙏
@@fraooqkhan2293 DON'T
how are you now did anything recover
Thanks for speaking out Ryan!
Accutane did much the same to me. And previous meds for Crohns. Well done for speaking out.
Hang in there my brother !! you will make it .. one way or another ! X
You are a warrior
Thanks for speaking
Prayers and respect I can only relate from taking an over the counter pro hormone for bodybuilding.Thought I was losing my mind for weeks only to find I had a total testosterone of 12 I was shut down so hard.TRT restored me but will never forget how it felt genderless. Hope you find a treatment that works cant imagine living life that way.
Have you fully recovered bro?
Have you had muscle loss? Did it stop?
It destroyed mines too😔😔. I got fibrosis and I need shockwave
This is fucking horrible, my life is totaly destroyed
Have you had muscle loss? Did it stop?
Hope you okay
Read my comment-Go ketogenic diet-take b complex and thiamine everyday-use sauna/heat-but a tens to stimulate nerves/spine -bottom of feet and private area to rebuild nerves! Keep looking-also a drop of lugols iodine everyday
Hey Patrik are you from Sweden?
Im from sweden, I hope you healt is better now.
If there was a 1 to 2 Percent chance of an airplane going down - would you get on it ?
Is the issue that the statistics on PFS are subjective OR are folks looking at the numbers and willing to roll the dice ?
I’m New to all of this and trying to get my head around the information available and the mind set of folks willing to take this drug .
From my studies people either didn't know the other plethora of side effects that come attached to it before making the decision to use fin, or they knew it and make the vain decision to get on it anyways for their hair (I was on the ladder example and decided not to take it). I think it's one thing to take a drug with the chance of mild side effects, but a complete different thing to take one with the possible side effects you hear these individuals complain about with PFS.
If the airplane goes down, you'll die. PFS leaves you alive -- but very much altered. Or in a hellish state. There's no real comparison.
The only thing that has helped get me through my symptoms was taking psychedelics with friends. It's the only thing thats helped wake my brain up again. Otherwise the emotional blunting, dissociation, and memory loss was totally unbearable. Im 25 and still missing huge chunks of time in my memory, but the symptoms have slowly gotten tamer. Strength to you my friend.
Are you still getting better?
@@lukasotlar98 not really man, at best I feel about 80-85% of where I was. Bad stretches are about half of that. Micro dosing sort've helps, but my current sortve cognitive baseline is very fragile.
@@dan5744 you can feel emotions, love, joy? Are u fatigued?
How about the emotional blunting
@@dan5744 micro dosing of what, finasteride?
God bless you.
I've been on finasteride for 2 years. No side effects.
my father took it for 17years than it stopped working
@@projekktmonarch5766 17 years is a good run. How old is he?
You’re rolling the dice … not worth it
@@semb12 nah I'm rollin' with a flock of hair! Lol
@@timmothyjennings Your call dude. You couldn't pay me to take fin
Did this person get better at all? I am suffering from finasteride induced aphasia, and it has been devastating and destructive to me.
Thanks for sharing your case
Tried to reply Ryan .I sm cancer free now .but still struggling.
now I have the same issue! I'm only 22. please someone help! I only took 2 pill
Now have you recovered bro ???
I wonder how are you still alive
It's extremely difficult
@@Funboyjosh2 how are you now
@@tired_of_everything0 I am going to make it out of this, fasting, diet changes, and other strategies are helping. A year ago I thought it was the end.
@@Funboyjosh2 please give me tips. what are you doing. eating etc. I'm having same issues. please help
@@tired_of_everything0 I'm in propecia help lazarusry.
I am from Durham Ryan .I also got tc whilst taking it .
Hi Steven how are you now
@@ryanclark5193 thanks for asking ,I am still having problems. Cancercfree at the moment ,but have other health problems.
@@ryanclark5193thanks for asking ,I am cancer free but still having health problems .
Thanks for asking .cancer freeborn lots of other health problems.
Positive re cancer recovery all other hhealth issuesl fin related mate? There's no end to what this can do to people. How long were u on it ?
Can someone explain to me, did he stop taking it and start having symptoms or was he taking it and the symptoms started to appear and he didn't know what the cause was?
The latter
In my 8th year.
How are you now
@@Slidehhy Same. Cognitive side effects are worst. Emotional numbing, brain fog and lack of motivation. Sense of smell and taste also affected. Physical effects im not concerned too much as they are not so bad mainly very low libido.
@@ashleysilver5594how do you cope
@@Slidehhy I'm trying many things but its the brain fog that's tough. Some days I cant get out. But I have good investments so don't need to work out. Many foods worsen the fog. Someone said to go to a gym and workout, as exercise raises testosterone. Don't know if anyone has tried this. Tell me if it works I will start.
@@ashleysilver5594 I loss sense of taste and smell too. Did anything get better for you? or everything is the same?
I can't live like this anymore man!
Wie gehts dir mein Freund?? mir immer noch total schlecht Gruß Franz
I'm still the same Franz
@@Funboyjosh2 nothing healing??? how long have You Quit this drug?
Anyone here have any benefits from kegels?
Yes. I sat at a computer desk for 3 years most of the day once I stopped standing and teaching and it ruined my posture and gave me duck butt and weak pelvic floor. My high alcohol intake combined with my bad and loose pelvic floor posture developed a very small testicular varicocele. Although small, it caused issues with sex (my left nut hurt). When I do kegels twice a day for a week or more and do jumping exercises like jump rope often it almost eliminates it. Many men suffering from ED or low libido may be experiencing a weak pelvic floor in combination with other conditions like poor circulation due to sedentary lifestyle and poor posture (looking at cell phones, playing computer games, etc.) so definitely do Kegels. Makes my balls hang low and loose. I also massage them daily very lightly in the shower to help the blood flow, nothing crazy. It relieves pressure and I feel normal again. I took fin for a week but had sides so I stopped but my libido was still the same. I got heart palpitations and brain fog. From what I have studied, everyone is different and the whole game is finding the sweetspot where you block DHT just enough. It's all trial and error and I blame the Rx companies for telling everyone to blast their brain and body with 1mg daily when .25-1mg 3x a week or less often is ideal and less risky.
someone here have fasciculation/spasm too?
Hot dang. You got a heap of problems.