6 months off propecia, don't want to lose hope

finasteride

#1

Hi there,
I’m 31yo from China. It’s kind of strange that I never thought I would type my story here but that’s what am I doing now. I took Propecia 1mg for 9 months and it’s 6 months now since my last dosage. I think I’ve waited quite long for my body to heal itself so I’m writing my story here as an addition to member’s stories here as well as asking for some advice for my next move.

Welcome to our community. Please fill in the following template as a way of introducing yourself, and helping others to understand your background and situation.

Where are you from (country)?
China

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?)
From Bing search engine since google is not available in China. Search term probably was “permanent side effects finasteride”

What is your current age, height, weight?
31yo, 176cm height, 66kg

What specific drug did you use (finasteride, dutasteride, saw palmetto, isotretinoin/Accutane, fluoxetine, sertraline, citalopram, leuprorelin, etc…)?
Propecia 1mg
Ordered from online pharmacy here in China. Got the shipment even without prescription. I just uploaded a photocopy of my dermatologist’s MPB diagnose…

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

What condition was being treated with the drug?
hairloss.

For how long did you take the drug (weeks/months/years)?
9 months from November 2017 till September 2018

How old were you, and WHEN (date) did you start the drug?
30yo, early November of 2017

How old were you when you quit, and WHEN (date) did you quit?
31yo, last 1/16 pill on September 1st of 2018

How did you quit (cold turkey or taper off)?
Tapered off by spacing out dosages off within 20+ days from 1/4 to 1/16 a pill

How long into your usage did you notice the onset of side effects?
Can’t remember the exact month. Low libido, erectile dysfunction, loss of morning wood, spontaneous erection and watery came probably at my 2nd or 3rd month on the drug. Some of them subsided or improved as the propecia manual instructed. But as I recalled none of those symptoms completely disappear since I was foolish enough to trade some sexual sides with my hair.

What side effects did you experience that have yet to resolve since discontinuation?

Check the boxes that apply. You can save your post first, then interactively check/uncheck the boxes by clicking on them. If your symptoms change, please update your list.

Sexual
[ x] Loss of Libido / Sex Drive Slightly improved throughout months after discontinuation
[x] Erectile Dysfunction My biggest worry which never left me, completely resolved during my “false recovery” and now it remains as when I was on Propecia
Complete Impotence
[ x] Loss of Morning Erections lost it completely during the last few months of propecia usage, can get morning erections now but still weak.
[ x] Loss of Spontaneous Erections Lost if completely on the drug. Only experienced once or twice from the last 6 months
[ x]Loss of Nocturnal Erections Tested with stamps back in Nov 2018, two months after stopped fin, it was there but weak like my weak morning wood.
**[ x] Watery Ejaculate Very watery on drug and lasted for a couple of months but then subsided. The last bit of my ejaculation now is still somewhat watery. **
[x ] Reduced Ejaculate Happened when my watery ejaculation period on drug but resolved now
Inability or Difficulty to Ejaculate / Orgasm
Reduced Sperm Count / Motility

Mental
Emotional Blunting / Emotionally Flat
Difficulty Focusing / Concentrating
Confusion
Memory Loss / Forgetfulness
Stumbling over Words / Losing Train of Thought
Slurring of Speech
Lack of Motivation / Feeling Passive / Complacency
Extreme Anxiety / Panic Attacks
Severe Depression / Melancholy
Suicidal Thoughts

Physical
[ x] Penile Tissue Changes (narrowing, shrinkage, wrinkled)
Penis curvature / rotation on axis
Testicular Pain
Testicular Shrinkage / Loss of Fullness
Genital numbness / sensitivity decrease
Weight Gain
Gynecomastia (male breasts)
Muscle Wastage
Muscle Weakness
Joint Pain
Dry / Dark Circles under eyes

Misc
[x ] Prostate pain Felt gorin discomfort very recently but not sure it’s prostate
Persistent Fatigue / Exhaustion
Stomach Pains / Digestion Problems
Constipation / “Poo Pellets”
Vision - Acuity Decrease / Blurriness
Tinnitus (ringing or high pitched sound in ears)
Hearing loss
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?
I decided not to intervene natural recovery so I didn’t take any supplements but multivitamin and jogging.

If you have pre or post-drug blood tests, what hormonal changes have you encountered since discontinuing the drug (please post your test results in the “Blood Tests” section and link to them in your post)?

I rushed to purchasing and using Propecia without any blood test out of desperation and stupidity.
But I did blood work twice before and after discontinuation. Here are my results;

First Test was on Aug 23rd during tapering off so it can be considered as my hormones on drug:
Free-Testosterone: 38.16 pg/ml reference range 15.2-34.9 so slightly above normal
E2 33.42pg/ml (25.8-60.7)
FSH 2.15 mIU/ml (1.5-12.4)
PRL 10.15 ng/ml (4.04-15.2)
PROG 0.232 ng/ml (<0.05-0.149)
TESTO 677.90 ng/dl (280-800)
LH 6.23 mIU/ml (1.7-8.6)

Second time I got my blood work done was because symptoms came back or didn’t resolve.
And it was already November 3rd
Free-Testosterone: 33.86 pg/ml
E2 43.12pg/ml (25.8-60.7)
FSH 1.8 mIU/ml (1.5-12.4) I noticed both times it was borderline low but the endocrinologist suggested it was normal
PRL 7.85 ng/ml (4.04-15.2)
PROG 0.216 ng/ml (<0.05-0.149) Mentioned this to the endocrinologist too. Said it was normal as well
TESTO 742.60 ng/dl (280-800)
LH 4.22 mIU/ml (1.7-8.6)

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

Tell us your story, in your own words, about your usage and side effects experienced while on/off the drug.

I picked up Finasteride for the same reason most people here, and mine was only mild hairloss. But I had tendency of OCD and anxiety long before my hair problem so it led to my poor decision of using Propecia, probably also my vulnerability to PFS according to some people here. Two dermatologist suggested against it but I was stupid enough to ignore them since not all of their theories made sense. Anyway, regrets can’t bring me back to pre-fin so here’s my story with finasteride.

First few weeks were side-effects-free. After a month or so(really cannot remember clearly) I started to notice lowered libido, very watery ejaculation and absence of morning erection.
Since they were expected for early usage I decided to continue and they did subside throughout the following months.
Just want to mention that naturally I didn’t have very high libido to start with. I have been single since summer of 2017 so I had no other ways to test my sex performance except masturbation. The anxiety and depression of noticing hairloss also clouded my attention to sexual sides. It was only until a brief and unsuccessful relationship that woke me up.

I started seeing a girl probably in June or July, 2018, one or two months before I stopped fin. I invited her home for dinner then we kissed. Nothing happened down there and I refused for further intimate activities because I thought I wasn’t very interested in her. I didn’t think about us too much afterwards but it let me noticed that I’ve lost desire for women. That was also when I started to relate everything with finasteride.

I started to search for persistent side effects of fin on Internet seriously and the results gave me a big shock. I came across this website a few times but didn’t dig in since by that time I didn’t know or believe PFS would happen to me.

I finally made the decision of quitting fin because I realized it wouldn’t worth to damage my health, also because Propecia didn’t do a great job at what it was supposed to do for me.
After some research online I chose to follow a taper off pattern:
From early August 2018 I reduced the dosage to 1/4 and took every other day, then 1/8 pill every 3 days after a week, another week on 1/16 pill every three days. Took my last 1/16 on September 1st and hoped I could recover before my birthday in mid September. I also did my first blood work during tapering off. The results turned out to be normal according to the endocrinologist.

Recovery did came after about ten days. It was like over a night my libido restored to 150% before fin. I got my first solid spontaneous erection during work. I was both happy and worried since I read from this site and many other posts that said this could be a “false recovery” that could only last for weeks. But I couldn’t worry too much since I was overwhelmed by the sex drive which was absence for about half a year. I remembered I ejaculated 4 times from first time till next day within 24 hrs. My penis has completed restored the size and hardness and the orgasm was intense as pre-fin. I think I was carefully enough not to abuse it and masturbate to depletion.

The extra libido faded in a couple of days and that was the best month of my entire 2018. I felt completely normal and traveled for music festivals in different cities. I thought I had never have to deal with Propecia or hairloss and was ready to turn a new page. I even tried to convince my friend to stop using Propecia at early October since I believe sides would happen to most people throughout time. He’s probably still taking it but he is well-tolerated at first place. I remember clearly that I was in good mood and great condition those days when we had the Propecia conversation. So I can be sure I kept the recovery for about a month or less.

The strange thing is that even I had an aggressive short recovery like the description of classic PFS. I didn’t really experience a crash. Probably because all my symptoms were sexual. Yes I do experience anxiety and depression but I had those tendencies long before and I really can’t relate them to fin.

In mid or late October I started to notice the sexual sides paid a revisit and decided to stay.
It included:
Very low libido: as low as I was on fin. Lost interest in women and sexual fantasie;

Absence of full erection at night and in the morning: I did a stamp text with my nocturnal erection, they only happen at very late night like 4am and It woke me up, so I couldn’t observe a full nocturnal erection or maybe it didn’t exist.
Penile shrinkage:
When flaccid, my penis seems to have more wrinkles than before. I always had long foreskin but I’m pretty sure the shaft is thinner than pre-fin. After ejaculation my shaft is usually even thinner and the gland remains large for a while probably because the blood’s still in there.
Erectile Dysfunction:
This is what concerns me the most. I couldn’t get hard by even look straight a t my favorite porn. It’s like your sex energy is trapped inside your body. The only time I obtained full erections after I quit fin was during the “false recovery” phase. I can’t reach full-hard erection with or without masturbation even until now. Erection size is probably the same as before. The gland is definitely not as hard and it loses it fullness during masturbation. Shaft is problably 70% to 80% as hard as before and shrinks much faster after ejaculation. My penis after ejaculation looks like lollipop with thin shaft and an olive-shaped head.
Ejeculation:
It is no longer watery or as least the first half aren’t. But never thick. The last bit is still somewhat watery even after one or two weeks of cessation.

I’ve confirmed a few times that my orgasm has recovered completely. Pleasure is intensive and satisfying. On fin it was shorter and duller.

I have experienced two short periods which I believed I was on the track to recovery.
First was early November 2018 when I got my second blood text done and was told that my sex hormones were by the endocrinologist. I was confused but also mentally relieved that at least I didn’t have to worry about raising my T or other things. My morning erections got slightly better afterwards and I could enjoy masturbation more.

Second time actually started with a new symptom. Before 2018 Christmas I was on an emotional downer again since I passed my 3rd month and sides didn’t improve significantly.
What was worse, I started to notice a discomfort from my pelvic area and it developed into a mild pain in a few days. I was really unhappy to notice this but stayed calm, even hoped for it could be a sign of some positive changes. So I waited and because of the discomfort I didn’t want to masturbate so it was an unwilling cessation for two weeks. Then one night I decided to let it off so I watch porn and it felt great. I could at least keep the erection probably because that was my first focused masturbation for quite a while. The second day my pelvic discomfort was gone and libido stayed. I ejaculated 3 times during 48 hours of that weekend. I decided not to abuse it since I remembered my first false recover. In my first ejaculation I found lots of jelly like things which I used to have long before fin.

Pelvic discomfort came and go after that good weekend but I was in a generally good mood until last week as libido dropped. But I can’t be sure whether it’s because I broke cessation and healthy people can have high and lows in their libido. As I am typing now on my sofa My libido feel like the worst days in October and a sex scene just flashed through TV and I felt nothing.

Now I have already passed several time marks:my false recovery two weeks after. 3 months as lots of ppl here suggested that the recovery could occur. I’m about to reach my 6th month time mark but I’m now in a downer.

Some says give it half a year or even two years. I also realized many people are here for many years but still looking for recovery. I’m now in a really confused state that whether I should continue to wait it out or start to take actions.

Looking forward to your advice and sincerely wish that all of us can walk out this nightmare soon


#2

Hello @GordonLu, welcome to the community and thankyou for writing your story up. I’m sorry to hear of your problems and hope that you will see some improvements. You may find some help in the topics here or just some solidarity with other people.

One of the problems we have is in being recognised. By coming together, our cause will be helped. We have started a number of foreign language forums such as the Chinese forum here:

https://forum.propeciahelp.com/c/zh

If you are a native Chinese speaker (I should say your English is great) would you mind creating a topic / replying to one there? We believe that there are a large number of Chinese people with PFS and having them be able to join in here would be a great help to our cause and to them.

Thankyou.


#3

Thx for the encouragement @Greek. Yeah I think I’ll create a post soon with Chinese. I still browse some Local Chinese forums and noticed some of us here have already noticed the persistent sides about finasteride but the majority of them are still arguing with each other. After all it’s hard to convince someone who Is well-tolerated now of the drug’s danger. I will try create posts from my home country’s finasteride forums to invite people with persistent sides here at the Chinese section.


#4

That’s great @GordonLu. We try and foster a friendly, tolerant environment here and are working with the scientific community. This is definitely the place for people with problems post finasteride/SSRI/Isotretinoin,etc to assemble.

We have other projects underway but our main project, a scientifically literate survey which will lead to our condition being recognised is due to release imminently. The more people we can have take part the better.

You can read about two of those projects here: