- Where are you from (country)?
USA
- How did you find this forum (Google search – if so, what search terms? Via link from a forum or website – if so, what page? Other?)
- What is your current age, height, weight?
48, 5’11", 200LBS.
- Do you exercise regularly? If so, what type of excercise?
1HR stationary bike
- What type of diet do you eat (vegetarian, meat eater, raw, fast-food/organic healthy)?
Not great, TV dinners & restaurant meals
- Why did you take Finasteride (hair loss, BPH, other)?
“Widows peak” hair loss
- For how long did you take Finasteride (weeks/months/years)?
17 years
- How old were you, and WHEN (date) did you start Finasteride?
1998
- How old were you when you quit, and WHEN (date) did you quit?
- I quit in 2002 for six months - no PFS
- I quit 2014-11-15 - horrific PFS in one week
- How did you quit (cold turkey or taper off)?
Cold turkey both times
- What type of Finasteride did you use – Propecia, Proscar, Fincar or other generic?
Propecia until 2005 (?) then generic F until 2014
- What dose did you take (eg. 1 mg/day, 1 mg every other day etc.)?
1.25mg on generic
- How long into your use of Finasteride did you notice the onset of side effects?
- immediate partial impotence after 1998
- totally impotent after 2014-12
- What side effects did you experience while on the drug that have yet to resolve since discontinuation?
Put an X beside all that apply:
Sexual
[ ] Loss of Libido / Sex Drive
[ x] Erectile Dysfunction UNTIL RECENTLY
[ X] Complete Impotence UNTIL RECENTLY
[ ] Loss of Morning Erections
[X ] Loss of Spontaneous Erections
[ ] Loss of Nocturnal Erections
[ ] Watery Ejaculate
[ ] Reduced Ejaculate
[ X] Inability to Ejaculate / Orgasm UNTIL RECENTLY
[ ] Reduced Sperm Count / Motility
Mental
[X ] Emotional Blunting / Emotionally Flat FOR 6 MONTHS
[ ] Difficulty Focusing / Concentrating
[ ] Confusion
[ ] Memory Loss / Forgetfullness
[ ] Stumbling over Words / Losing Train of Thought
[ X] Slurring of Speech
[ ] Lack of Motivation / Feeling Passive / Complacency
[ ] Extreme Anxiety / Panic Attacks
[ ] Severe Depression / Melancholy
[ X] Suicidal Thoughts ATTEMPTED SUICIDE THREE TIMES
Physical
[ ] Penile Tissue Changes (narrowing, shrinkage, wrinkled)
[ ] Penis curvature / rotation on axis
[ ] Testicular Pain
[ ] Testicular Shrinkage / Loss of Fullness
[ ] Genital numbness / sensitivity decrease
[ X] Weight Gain PROBABLY UNRELATED TO PFS
[X ] Gynecomastia (male breasts) FOR 2-3 MOS ONLY
[ ] Muscle Wastage
[ ] Muscle Weakness
[ ] Joint Pain
[ X] Dry / Dark Circles under eyes FOR 2-3 MOS ONLY
Misc
[ ] Prostate pain
[ ] Persistent Fatigue / Exhaustion
[ ] Stomach Pains / Digestion Problems
[ ] Constipation / “Poo Pellets”
[ X] Vision - Acuity Decrease / Blurriness SEVERE DOUBLE VISION FOR 2 YEARS
[ ] Increased hair loss
[ ] Frequent urination
[ ] Lowered body temperature
[ ] Other (please explain)
- What (if any) treatments have you undertaken to recover from your side effects since discontinuation of the drug?
1 T injection in buttocks in 2015
-
If you have pre or post-Finasteride bloodtests, what hormonal changes have you encountered since discontinuing the drug (pls post your test results in the “Blood Tests” section and link to them in your post)?
-
Anything not listed in the above questions you’d like to share about your experience with Finasteride?
-
Tell us your story, in your own words, about your Finasteride usage and side effects experienced while on/off the drug.
I practiced law from 1996-2014
I was superbly healthy until mid-2014. I was a triathlete.
BUT I had rapidly started losing my hair when I turned 18. No treatment at the time.
I was inconsolably miserable about losing my hair. But the recession slowed and I still had most of my hair in 1998, when I was 30yo.
I read about a miracle drug called Propecia. It was used to treat prostate cancer but unexpectedly stopped hair loss at the center of the head. I have “widow’s peak” hair loss.
So I took a chance and paid $1 a day out-of-pocket for the next 10 years. It stopped my hair loss 100%. It went generic in 2005 and became much cheaper. So I kept taking it. ZERO hair loss in 20 years. Miracle drug!!!
That’s the good news.
The prescribing docs didn’t understand the drug but did warn me that I would lose my hair if I stopped taking it.
I did a bit of due diligence. The drug papers warned that 1% of users would become impotent. I chose to risk it.
I immediately experienced horrific acne but it disappeared after 1 week.
I did quickly experience partial impotence. My erections felt less firm at times, other times rock solid. Normal orgasms.
But I kept taking it.
I landed a GF in 2002. To keep her happy I took Viagra before sex to firm me up without telling her.
I hated using V - gave me severe back pain etc. So I discontinued P for 6mos in 2002 and was fine.
Still remained partially impotent so I went back on P after 6 mos to keep my hair.
Fast forward to mid-2014. Overnight I began sleeping no more than 4 hrs a night. Docs/drugs were useless. But I felt OK otherwise.
Fast forward to Nov. 2014. I had landed a new GF but could not getan erection with her so I decided to go off the drug to hopefully restore full potency.
I consulted a urologist who was 100% useless. He had no clue about PFS.
So I stopped taking the drug.
One week later my life became a living hell.
First, I became 100% impotent. Very complicated but it has improved DRAMATICALLY recently.
Second, my brain melted down insanely. I can’t begin to describe it. I was dizzy. My eyes turned blue/black.
Third, I stopped sleeping at all. ZERO sleep. Four months later docs were able to restore normal sleep through various drugs.
Fourth, I became severely depressed and cut off contact with family/work/gfriend.
Docs were clueless/zero help.
Somehow on my own I learned about post-finasteride syndrome.
Maybe 2,000 men have suffered it. ALL become instantly impotent. ALL suffered unsightly black eyes. Lots of other bizarre brain effects. According to Internet, there was ZERO treatment for the foregoing. ZERO hope for any recovery. In 1000 years they may solve it.
Tragically, ALL contemplated suicide and SOME followed through.
On forum (?) 100% of members chatted about when/how they would kill themselves. So I’ve never been back since until today.
Docs said I was insane to believe I had PFS. They were useless/clueless.
Black eyes resolved after 2 mos.
BUT I agreed that suicide was the only solution. Totally impossible to buy a gun in DC so I decided to starve myself to death. I nearly succeeded, lost 100 lbs. by mid-March 2015. 99.5% dead by then with ZERO sleep to boot.
Of course friends/family/work tried to rescue me. The cops and Dad TWICE broke into my apt. to haul me to the hospital. But the docs were too clueless to handle a freakish case like mine. So they just released me.
In Feb 2015 I had convinced Dad I had PFS and he set up an appt. with the world’s top PFS doc in DC, Dr. Erwig.
He told me “of course you have PFS. But there’s nothing to do about it. IT’S LIKE FALLING OFF A ROOF."
He also noticed that I was skinny and recommended that I go back on F, which I did not.
Finally my UK sister flew to DC and properly rescued me in March 2015… I don’t remember for two weeks what happened. I stayed in the hospital for 2 months. They restored my sleep and weight and again told me I was insane for believing I had PFS. I OBVIOUSLY was just depressed and they prescribed 10+ anti-depressants. They thought I was lying or confused about impotence so they brought in 5 expert 100% useless urologists who told me that I was lying/confused/conned about PFS. They also put me on a walker which I still use.
So fast forward to Dec. 2015. I’m using a walker, secretly impotent but otherwise can work/drive/function/sleep normally.
I wake up one morning and my natural voice has disappeared. I sound totally different and can only speak one word at a time.
I kept working for another month but just quit one day out of despair. Making a long story short my dad hooked me up with disability and my sister FORCED me to move to Charlotte.
So I become DEPRESSED again. Once again I came up with plan to kill myself. I try to hire my maid to buy a gun for me. She’s also my sister’s maid and instantly calls my sis.
So all hell breaks out AGAIN and I get hauled off to the hospital FOR ANOTHER TWO MONTHS. This time they give me 20 anti-Ds and again insist I am crazy for insisting I have PFS.
Docs speculate that near-starvation may have caused speech problems.
After endless rehab and therapy, they finally release me. Rather than just abandon me to my apt. they insist I hire TWO assistants to keep me from killing myself again and nursemaid me.
With them around, I have to PRETEND that I want to live even though I’m secretly applying for a gun permit.
It’s Feb 2016 and I open the mail and the letter states ‘you are PERMANENTLY ineligible for a gun permit bc you were involuntarily committed to a mental institution.’
Eventually it occurs to me THAT I WILL BE forced to live and JUST DEAL WITH IT. So I do…
In Dec 2016 I stopped sleeping again TOTALLY.
In Jan 2017 I go to the Mayo clinic for 4 days. I have a 5th head MRI. Docs say my cerebellum shows brain damage.
Sleep doc has no plan to deal with sleeplessness. Speech doc recommends vocal therapy.
Fast forward to present day to the sorta-happy ending.
I’ve forgotten about suicide and refuse to believe I tried to kill myself THREE times.
Three days ago I became fully potent again. I can masturbate/orgasm with hard erection.
My double vision has disappeared.
I still cannot sleep.
