My PFS Story (2.5 years)

#1

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)? 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?) Google

What is your current age, height, weight? 28/5’7/140

What specific drug did you use (finasteride, dutasteride, saw palmetto, isotretinoin/Accutane, fluoxetine, sertraline, citalopram, leuprorelin, etc…)?
finasteride

What dose did you take (eg. 1 mg/day, 1 mg every other day etc.)? 1.25mg/day (1/4 of a 5mg pill)

What condition was being treated with the drug? hair loss

For how long did you take the drug (weeks/months/years)? 1 year 3 months

How old were you, and WHEN (date) did you start the drug? 24, August 2015

How old were you when you quit, and WHEN (date) did you quit? 26, October 2016

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

How long into your usage did you notice the onset of side effects? Half way through. Didn’t have noticeable sides at first but when I refilled my prescription I noticed an increase in sides.

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
Loss of Libido / Sex Drive
Erectile Dysfunction
Complete Impotence
Loss of Morning Erections
Loss of Spontaneous Erections
Loss of Nocturnal Erections
Watery Ejaculate
Reduced Ejaculate
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
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
Prostate pain
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? none

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)?

Anything not listed in the above questions you’d like to share about your experience?
Also took Acutane as a teenager but never had any issues

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

So I’ve put off doing this longer than I should have, but it’s hard ya know? I first noticed my hair thinning when I was 21-22 and even got finasteride from my dermo but didnt take it more than maybe once or twice. I stopped more because at the time I couldn’t keep up with taking it everyday and it just wasn’t that big of a concern. Around July 2015 (24) I started taking finasteride for hair loss after a breakup that left me wanting to “improve” myself. I started working out more, eating better, etc. and decided to start taking that finasteride that I had gotten from my dermo a couple years prior since my hair was starting to get noticeably thin. It’s hard to remember details (brain fog) but I don’t think I had any side effects the entire time I was taking that specific bottle of finasteride. When I got the script refilled I remember noticing a slight pain in my testicles. I knew that and other things were common side effects but it seemed weird since I never had that before. As the second bottle was getting low I decided that I would not get it refilled. Besides the occasional ball pain I had noticed a decrease in sex drive and difficulty maintaining an erection. I don’t think those side effects at the time were even all that bad in terms of strength (nothing like post-fin) but they were worrisome enough that I decided I didn’t want to have to take it for the rest of my life. If I remember correctly my crash was within a week from when I stopped taking it. Up until the crash I was happy as I felt normal and even hornier than usual. To make a long story short I masturbated at least twice one evening/night (might have been 3, I remember thinking it was weird how horny I was that night). Also this part is fuzzy, I cant remember if it was after the last time I masturbated or when I woke up in the morning that I immediately noticed something was wrong. My mind to penis connection (saw someone refer to it as this not sure how else to say it) felt like it was gone. Like if I wasn’t looking at my penis I couldn’t be sure it wasn’t there. Overall I just felt weird. I was lethargic and had trouble thinking. So either that day or a few days later having still had the same problems I decided to look into the normal timeframe it takes for them to go away. That’s when I became aware of the possibility they wont go away.

Honestly, scrolling through google and coming to the realization that I was one of those unlucky people whose side effects seem to be permanent was the scariest moment of my life. I’m tearing up just typing this. I remember my heart dropping and I just felt like this couldn’t be real. From then to now I think I’ve improved in certain areas but still have issues overall. I’m dealing with my depression and sense of hopelessness with wellbutrin, but even taking 300mg daily I’m apathetic about almost everything. I’m thinking taking antidepressants because of my condition isn’t going to help as long as my condition remains. I’ll probably stop taking that soon. After my initial research into possible treatments I didn’t search too much as I didn’t want to make myself feel worse. I’ve basically just been distracting myself the past few years and ignoring the fact that I feel like an asexual zombie physically, even though I’m still attracted to women mentally. I’ve been reading a bunch of threads the past few days and even though making an account here was another time I had to accept/face whats happened to me, I’ve decided I need to at least try and stop ignoring it. You guys are a wonderfully supportive community and I want to be a part of that for myself and to help others.

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#2

Sorry all this happened to you, and welcome!

Have you taken the survey yet?

#3

Welcome @firstnamelastname and thanks for sharing your story.

That’s lovely to hear. Many of us are here for the same reasons, so I’m glad to have you with us :slight_smile:

As @MerryChristmas says it would be tremendous help if you could take the survey (accessed by the bar graph in the top right of the forum when you’re on a desktop or laptop). It really helps us to accurately present data on the condition.

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#4

Thanks for signing up @firstnamelastname. We are aware that there is a lot more traffic to this site than our active membership suggests and I’d like to encourage anyone else who is dealing with this but hasn’t signed up to jump in.

I’m very aware of the apathy problems you mention and the need to keep actively pushing yourself along in a way that came naturally before. I often find I think about what I’d like to achieve the next day but when the day comes I feel lethargic or uninspired or inclined to do something else instead.

Because of this I’ve started to write “to do lists” where I plan what I’ve got to get done the following day. This helps me as sometimes I get to a point in the day where I think it’s too late to start whatever I was thinking of but the list helps me get started.

On the list I write the task I’m planning and budget a time for it. It’s normally only an hour but it makes a big difference to see that written down as all of a sudden my time is broken into chunks and it helps me put my necessary activities ahead of timewasting ones like lying on the couch watching YouTube.

I don’t know if that’ll help anyone else but it’s worth a try.

5 Likes
Can we break 90 people in the survey by July 1st?!
#5

Welcome to the forum!

There are a lot more of us than Merck wants us to believe. Just in the past two weeks I discovered two people in my friendship circle that have some form of PFS. One got it from Saw Palmetto and one from Propecia.

Besides filling the survey, it is important to report your symptoms to the FDA. The thread below will tell you how to do it. Admins, please correct me if there is a better way.

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#6

I actually just submitted a new MedWatch report myself with updated information about my symptoms. My previous one was from October 2016.

#7

If that’s current it’s fine as he’s in the US, but if it’s useful we do have a resource on our website that may be helpful to link to users more generally in the future:

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#8

What! This deserves it’s own topic or paragraph in your member story. I’m aware of 3 people from IRL who I’m fairly certain have/had this condition.

#9

I plan on doing the survey today. Getting close to 100 participants!

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#10

Good man. Remember that it’ll save your progress so if you don’t complete it, you can get the rest done tomorrow.

#11

I do the exact same thing with the to-do lists as I have ADHD so I kind of have always been scatterbrained. I’ve even tried to make a complete schedule for a typical week and plan time for various things but its easier said than done lol.

1 Like