Took F for 17 yrs


#1
  1. Where are you from (country)?

USA

  1. 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?)

GOOGLE

  1. What is your current age, height, weight?

48, 5’11", 200LBS.

  1. Do you exercise regularly? If so, what type of excercise?

1HR stationary bike

  1. What type of diet do you eat (vegetarian, meat eater, raw, fast-food/organic healthy)?

Not great, TV dinners & restaurant meals

  1. Why did you take Finasteride (hair loss, BPH, other)?

“Widows peak” hair loss

  1. For how long did you take Finasteride (weeks/months/years)?

17 years

  1. How old were you, and WHEN (date) did you start Finasteride?

1998

  1. 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
  1. How did you quit (cold turkey or taper off)?

Cold turkey both times

  1. What type of Finasteride did you use – Propecia, Proscar, Fincar or other generic?

Propecia until 2005 (?) then generic F until 2014

  1. What dose did you take (eg. 1 mg/day, 1 mg every other day etc.)?

1.25mg on generic

  1. 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
  1. 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)

  1. 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

  1. 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)?

  2. Anything not listed in the above questions you’d like to share about your experience with Finasteride?

  3. 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.


My SECOND Valentine's Day POST PFS - 100% cured of sexual probs, my advice
PFSFoundation.org's stellar "medical literature" will QUICKLY CONVINCE ANY DOC that PFS is a legit disease
My SECOND Valentine's Day POST PFS - 100% cured of sexual probs, my advice
#2

So I was infused (into my bloodstream) with 5,000 mg of methylprednisolone administered over 5 hours in February 2017.

5 MONTHS LATER I WAS FULLY POTENT AGAIN!

Either methyl did the trick or I naturally recovered.

Attached are my doctor’s notes.

Methylprednisolone is a steroid that prevents the release of substances in the body that cause inflammation.

Methylprednisolone is used to treat many different inflammatory conditions such as arthritis, lupus, psoriasis, ulcerative colitis, allergic disorders, gland (endocrine) disorders, and conditions that affect the skin, eyes, lungs, stomach, nervous system, or blood cells.

Methylprednisolone may also be used for purposes not listed in this medication guide.

What is methylprednisolone?

Methylprednisolone is a steroid that prevents the release of substances in the body that cause inflammation.

Methylprednisolone is used to treat many different inflammatory conditions such as arthritis, lupus, psoriasis, ulcerative colitis, allergic disorders, gland (endocrine) disorders, and conditions that affect the skin, eyes, lungs, stomach, nervous system, or blood cells.

Methylprednisolone may also be used for purposes not listed in this medication guide.



#3

So I went to the ER on July 28, 2017, for off-the-charts ataxia and sleeplessness for seven months.

I have extremely severe ataxia now. I feel disconnected from my own body. I feel drunk-out-of-my-mind. My 1lb. iPad feels like it weighs 100 lbs. I have no sense of balance left. I can barely walk with my walker, my head spins around at 90mph and my arms/legs feel like “spaghetti” appendages.

I haven’t slept since Dec. 2016. I do “rest” for 3 hrs a day but I don’t sleep.



#4

On Tuesday August 1, i began taking THREE prescription meds for sleep:

  • doxepin 50mg
  • mirtazapine/remeron 30mg
  • nortryptaline100mg

THEY WORKED!!!

On 8/1 I slept for 9 hours.
On 8/2 I slept for 7 hours.







#5

Unfortunate, potency didn’t last. I was in the ER/hospital for five days and I emerged totally impotent.

But I can rest/sleep for 8+ hours with the triple drug cocktail described above.


#6

Well amazingly potency has returned after it disappeared for 70 days.

I was able to masturbate to ejaculation.

Hopefully it will be permanent.

Unfortunately I have not slept at all for 1.5 months.


#7

These are my most recent T results:

All normal.


#8

How does the not sleeping thing work, how are you not dead? When you search how long a human can survive without sleep it says 11 days.


#9

Ha-ha!

That’s exactly what I thought too. Before 2015 if I had disrupted sleep for two nights in a row I was a total trainwreck and desperate for proper sleep.

Bu then I did not sleep one second from mid-Dec 2014 - mid-March 2015.

And now I have not slept one second since Dec. 2016 except I slept normally for two weeks with a new sleep drug in August 2017.

It’s totally freakin’ impossible … except it isn’t…


#10

I’m happy to report that the sexual plumbing continues to work fine.

I suspect everything started working again a long time ago. But I refused to have sexual thoughts, look at erotic pics or videos, or try to masturbate because I was convinced I was permanently impotent and I would fail if I tried and it would severely depress me.

So maybe y’all should try again too…


#11

I keep coming back to your topic and it’s so scary. It’s like reading a horror script.

You tried to starve yourself to death? Jesus.

All those depression drugs you took can cause PFS too. Don’t take any of those again.


#12

Thanks, I guess. :0

I blame the PFS forums! I don’t remember which one, but in Dec. 2014 I found a PFS forum and EVERYONE was talking about suicide. I remember vividly certain comments:

-“I live in Canada and can’t buy a gun.”

  • (Responding to another poster) “You just take it for as long as you can and then blow your brains out.”

So I abandoned the forums but I became obsessed by suicide after reading those comments.

I only came back recently after I surprisingly regained full potency and wanted to spread the good news.


So my Qs are:
(1) What % of PFS victims have recovered full potency? Is full potency recovery extraordinarily rare? (There are only 8 recoveries detailed in the Recovery sub-forum.)
(2) What % of PFS victims have recovered partial potency, i.e. generally unresponsive but occasional erections/masturbation?
(3) How long has recovery typically taken?


#13

You’ll never get an answer for those questions, it’s impossible to know the statistics. Everyone’s body reacts differently to this drug, some people heal various side effects within a month, some within a year, some never.

If that Dr. Erwig suggested you get back on fin maybe you should consider it man. Periodically or something, not daily. How much longer can you go without sleeping? At this point what other options do you have? You’ll probably lose your erections but you might be able to sleep and not die.


#14

Yes I was the “poster child” for the “miracle” drug F:

17yo:

40yo - you can see moderate frontal balding:

45yo - went back to longer hair:

My maternal gfather, my genetic destiny:


#15

It was a very casual suggestion, along the lines of “what the hell, give it a try.” He had already told me “Unfortunately there are no known effective treatments for PFS/impotency. I’ve conducted the only formal medical research on the issue. The prospects are so grim 40% of PFS victims have contemplated suicide.”

I had read several posts on the PFS forums where PFS victims reported no benefits from resuming F, so I didn’t bother.


#16

Fair enough but there are 5,000 forum members and gazillions of posts. I can’t possibly weed through these. Surely, a veteran forum member can report “there have been very few/some/lots of PFS victims/forum members who have reported recovering full potency.”

From what I’ve seen so far, it’s extraordinarily rare for PFS victims - especially those who got “full blown” PFS (black eyes, breasts, penis pain, insomnia, etc.) - to ever recover full potency like me.

And the only “special/unusual” thing I tried was 5 days of steroids (methylprednisolone) injection into the bloodstream, which MAYBE the “miracle” cure we’ve all been trying to find.


#17

#18

Bro your grandfather didn’t look like he lost that much hair. I can’t see the crown so he might be bald there but if all he lost was frontal he could’ve easily gotten a pretty good transplant and maybe you could’ve too. Too late now though.

Well you kind of didn’t become fully potent again if you don’t have spontaneous sexual thoughts or erections. That’s a big difference, I have night and morning wood but I don’t get spontaneous thoughts during the day at all. You’re supposed to get them so your dick stays straight lol. Methylprednisolone could’ve helped you, anything’s possible. Post it in the Drug forum maybe some other people would like to try it.

This forum isn’t anywhere near conclusive on people who’ve gotten better or not. A lot of people don’t even know about it. I’ve come across random reddit threads about people getting better randomly after months or years so people do heal, but again there’s no way to get an accurate figure.

I see Erwig’s point if even he was just saying it casually. If you’ve taken it for over a decade what’s a few more pills gonna hurt lol, but it’s your body, your decision so I get why you don’t want to do it either.


#19

Well on a positive note, I’m donating blood Saturday for the first time in 20 years!

'Tis the season :wink:


#20

Dude u crazy for taking Finasteride for that…Not pattern balding Everyones hair changes from teen age years even those that maintain all of their hair and don’t bald…Hair changes naturally as you age…Nothing u can do about that it’s called mature hair line…And any Dr that would suggest you get back on fin I would question his sanity and whether he should maintain a license to practice…Hard to believe the men that have fucked themselves up with this brain damaging drug who didn’t even have hair loss…