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?)
I’ve known about the forum for some time, have only recently joined.
What is your current age, height, weight?
25 years old, 6’2”, 180lbs.
What specific drug did you use (finasteride, dutasteride, saw palmetto, isotretinoin/Accutane, fluoxetine, sertraline, citalopram, leuprorelin, etc…)?
Finasteride, then Dutasteride, then topical Finasteride + Minoxidil.
What dose did you take (eg. 1 mg/day, 1 mg every other day etc.)?
While on Finasteride: 1.25mg daily.
After switching to Dutasteride, 0.5 every 3-4 days.
What condition was being treated with the drug?
Mild AGA.
For how long did you take the drug (weeks/months/years)?
4 years.
Date when you started the drug?
10/7/17
Date when you quit the drug?
12/10/21
Age when you quit?
How did you quit (cold turkey or taper off)?
Cold turkey.
How long into your usage did you notice the onset of side effects?
3 years, 4 months.
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
[X] 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
[XX] Emotional Blunting / Emotionally Flat
[X] Difficulty Focusing / Concentrating
[X] Confusion
[X] Memory Loss / Forgetfulness
[X] Stumbling over Words / Losing Train of Thought
[X] Slurring of Speech
[X] Lack of Motivation / Feeling Passive / Complacency
[X ] Extreme Anxiety / Panic Attacks
[X] Severe Depression / Melancholy
[XX] Suicidal Thoughts
Physical
[X] Penile Tissue Changes (narrowing, shrinkage, wrinkled)
[X] Penis curvature / rotation on axis
[X] Testicular Pain
[X] Testicular Shrinkage / Loss of Fullness
[X] Genital numbness / sensitivity decrease
[X] Weight Gain
[X] Gynecomastia (male breasts)
[X] Muscle Wastage
[X] Muscle Weakness
[X] Joint Pain
[X] Dry / Dark Circles under eyes
Misc
[X] Prostate pain
[XX] Persistent Fatigue / Exhaustion
[X] Stomach Pains / Digestion Problems
[ ] Constipation / “Poo Pellets”
[X] Vision - Acuity Decrease / Blurriness
[X] Tinnitus (ringing or high pitched sound in ears)
[X] Hearing loss
[ ] Increased hair loss
[ ] Frequent urination
[X] Lowered body temperature
[X] Other (please explain)
Severely dry skin, skin makes absolutely no oil.
Severe head and neck pain in varying degrees 24/7.
What (if any) treatments have you undertaken to recover from your side effects since discontinuation of the drug?
Naturopathic treatments so far. I’ve tried many, many supplements, but none of them helped so I am trying to take a natural approach including juicing, sauna, and will work my way up to exercise when I have energy for it again.
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)?
Testosterone was in 300s-400s at crash. LH and FSH were both low at the crash. Iron saturation read “alert” status because it was extremely high. LDL cholesterol was low.
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.
Alright, been delaying making one these for a while. Surreal to be putting all of this down in one place.
I was 21 when I started taking finasteride due to early AGA, and initially I tolerated the drug very well, I had no side effects at first, in fact my libido was very very high the first 2 years on finasteride (at least twice what it was before finasteride). As time went on I began to develop severe acne on my cheeks, along with worsening depression. The depression started about a year in and became worse and worse until it became more severe than anything I’d experienced in my life. Of course I didn’t make the connection that this was because of finasteride. 3 years in I noticed I had some slight, slight thinning on the crown that I hadn’t noticed before, and I requested to switch to Dutasteride. I saw a dermatologist in Burbank by the name of Yuval Bibi, who filled the prescription. I took Dutasteride for a year without any real issues other than the same depression and acne becoming worse and worse.
The story takes a drastic turn for the worse in March 2021, one day I woke up and felt severely lethargic for no reason, and could barely walk throughout the day. I had no energy. When I got home from work that day, I noticed upon masturbating that my penis was completely numb, felt dead and dry, and my libido was suddenly at zero. My erections were weak, all of the moisture of my penis was gone, and I had zero desire to have sex. I forced myself to finish the job and felt absolutely nothing upon climax. Just a week prior my libido was normal, but now it was literally at zero to the point where I remember thinking that I did not understand why I’m even interested in sex at all. I did not believe at all in PFS so I convinced myself I must be having some on drug side effects and went to see my dermatologist about stopping the drug.
They asked me if I had any issues while I was on finasteride and I said no, so they recommended I switch back to finasteride since I seemed to tolerate that better (even though I also tolerated dutasteride fine for a year prior to this). I switched back to finasteride (which obviously was a dumb decision and I should’ve stopped taking ALL 5ARIs at this point permanently, but still was obsessed with my hair, and was being told by a doctor that going back on finasteride would be a safe option to try before ditching it completely). I continued to take finasteride for a couple of months and my sexual symptoms remained - but I only had the sexual symptoms while on the drug. I ceased finasteride a few months later, and was off for about 2 months with zero change. I told my dermatologist and they said that if quitting the medication didn’t resolve the side effects, the issues simply weren’t due to the medication. I made the most idiotic decision of my life to try topical Finasteride with minoxidil one last time before I quit all meds forever (my logic at the time was that I didn’t want to be impotent AND bald, since the sides weren’t changing while I stopped the medication.) The doctors told me topical has an extremely low incidence of side effects since it doesn’t get absorbed, blah blah blah, and I started topical finasteride + minoxidil.
One week into topical, things felt off. I felt dizzy, confused, and cognitively I was a wreck. I felt strange cognitively in ways I never had before, and I felt a sort of “confusion” on the right side of my body, as if I didn’t understand how to make the muscles move on the entire right side of my body as intuitively as I usually am, and this was to a very noticeable degree. I went to bed one night and the next morning I woke up, reality as I knew it was different.
People often speak of PFS brain fog, but what I felt upon waking on this particular day was so unbelievably cloudy and confused, being stoned would feel like complete cognitive clarity in comparison. On this day, I also began to experience total Depersonalization / Derealization which I had never felt before. No anxiety led to this either, which was strange because usually when you look up DPDR, anxiety preceded it in most cases. I was cognitively a wreck, and decided I needed to stop all medications and just forget about my hair and try to get back to some sense of normalcy. However, unfortunately it was too late.
I quit the drug on December 10th, 2021, and went home to see my family for a couple weeks as I do at the end of every year. During this time, most of the cognitive symptoms I was experiencing were slowly residing, and not only that but I began to feel as if the depression I had the entire 4 years I was on these drugs was beginning to lift. This was the beginning of the worst and I had no clue. I felt like my libido had actually come back in about 30-40% capacity in these weeks, and I just felt better overall. I had a severe acne breakout on my cheeks, my skin was super oily, and I felt better than I had in some time. My mental clarity during this trip was becoming extremely sharp, and I thought I had recovered, and was going to get my full libido back over time.
Obviously we all know how this story goes. Two weeks after quitting, my libido went back to zero. I was experiencing strange fluxes in cognition all the time that I didn’t understand at all, but I was still relieved that my depression was fading. Another week went by and I realized that not only did my depression fade, so did all of my emotions. I was an EXTREMELY emotional person my entire life but now I could feel nothing, at all. It took me a while to realize what was happening. I had never heard of anhedonia, or that losing your emotions was possible, until it happened to me. The next few weeks, things got much, MUCH worse.
I quit the drug December 10th, and was mostly experiencing complete sexual dysfunction (numbness, no libido) and no emotions until around February 20th. This is the night when I truly believe I had the infamous “crash” that everyone speaks about.
I could not sleep one minute of the night. When day broke the next day, I could barely move. My muscles were twitching everywhere, violently. I literally could not lift my body from my bed, so I had to call my dad to come down to my house and basically do everything for me. My skin suddenly was severely dry, I had no emotions, no sexual function, and couldn’t move. The muscle twitches were severe and constant, and my entire body began to ache. The following week was more traumatizing and hellacious than the entirety of my life up until this point combined, and I’ve been through some shit.
I began to experience severe, severe malaise and brain… swelling? Heat? Inflammation? I don’t even know, but it felt like my head was going to explode, and I was on fire, and I had no emotions to have any kind of calm. On day 2 of no sleep, the symptoms were 10/10 severity. I was in my dads car with him and I begged him for about 2 hours straight at the top of my lungs to let me kill myself. I have never been suicidal before this point, and have never said anything of the sort to my parents. What I was experiencing was unbearable. It felt like my brain was swelling so much it was going to explode. The pain was absolutely horrendous.
I begged my dad to take me to the ER. I could not walk at all. My dad had to basically carry me and then put me in a wheelchair. Of course at the ER, telling them this is all from finasteride / dutasteride made me look like an absolute idiot and they basically laughed at me, told me to take melatonin, and go home. (I was at UCLA which coincidentally has an andrology department that acknowledges PFS, but I guess the memo didn’t get to the ER in the same hospital.)
On the following days of the same week, all of those symptoms stayed the same, and I began to become severely mentally ill. My body would not let me sleep one minute of the night, my sense of reality would completely evaporate from time to time, and I was a complete cognitive wreck. I began having schizophrenic type delusional talk about the nature of god to my dad because of how insane I was becoming. I sounded completely mentally disabled, and was slurring my words and acting drunk. I was on no substance. The brain pain during this episode coupled with the insomnia, no emotions to cope at all with anything, on top of complete sexual death, made this feel like it was the end for me. This crash was so severe I cannot believe I survived whatever the fuck happened during it.
A week or so later, I finally was able to sleep again, and for the most part, insomnia started to fade for a few weeks.
I’m now 7 months off the drug and my symptoms have not improved much at all, and I’m getting weaker by the day. Luckily, insomnia has gone back to normal and I can at least sleep every night decently. I also have nocturnal and morning erections now, but outside of those two improvements, there’s nothing.
Anhedonia is the worst by far symptom. I cannot feel anything, ever, at all. People have died that I cared deeply for during this and my emotions didn’t budge. I literally could not feel more empty. As you all know this is nothing like depression, and I would go back to being depressed in a heartbeat if I could stop feeling this anhedonia. I was a musician and producer and mix engineer, and 100% of the passion and creativity for that has left me. My skin is SEVERELY dry, my bones feel like they’re breaking every day, I am unbearably weak, unable to build muscle, completely sexually numb in every regard, emotionless, and have a general disconnect from reality and slowness most of the time. I cannot understand for the life of me why all of these symptoms started only after stopping the drug, save for the sexual ones. It blows my mind. I am of course, highly suicidal, and have probably strongly considered suicide every hour of every day since this started. Of course, my relationships with family and friends have fallen to absolute shit in the 6 months I’ve had this, as there is no pre existing marketing for this condition and therefore no one is going to give you even close to the sympathy you deserve for it, and at best they’re going to tell you to take testosterone shots. Or practice mindfulness. Being expected to operate in society like this is absolute hell for me on a daily basis. I spend a lot of my time trying to convince my parents how horrible this is as I feel no one has any clue whatsoever the severity of what I’m going through, probably chalking it up to erectile dysfunction and forgetting about it. I literally feel as if I’m 100 years old. This is surely the worst thing that can happen to a man on this planet. There could not be a worse circumstance.
Any way, I’ve met some incredibly strong people that have also dealt with this and I’m trying to plan ways to recover as much as I feasibly can while maximizing contributions towards research from this community.
Those of you that have had this for years, you are incredibly strong and likely stronger than I. I am trying to keep hope but this condition is an assault on the soul. There is not a single aspect of myself that remains other than a vague semblance of my logic, and my visuals, both of which are also fucked (I have brain fog and severe visual snow). I just want my emotions back. I cannot stand that symptom. I need to cry about the insane inhumane levels of trauma I’ve been through, but I can’t. This is a level of suffering not redeemable by the meaning that is achieved through grieving a loss. It’s like being kicked down to your knees and beaten, and having the ability to grieve ripped from you simultaneously. It’s suffering without reprieve, a dissonance without resolution. I hope at some point I’m able to have more strength than I currently have, because I truly feel as though I’m dying, and rapidly. I pray there is an answer to this hell out there somewhere, and I will try to both heal myself and keep myself alive to solve this problem.
Self-reporting template - ONLY USE FOR FUTURE POSTS TO REPORT ANY TRIALS OF TREATMENTS, NOT YOUR INITIAL MEMBER STORY
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Name of the therapy/substance:
- Dosage:
- How often you took it:
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Status
- Still using [ ]
- Stopped with no lasting change to initial symptoms [ ]
- Stopped with persistent change to symptoms [ ]
- Duration of use: Days [ ] Months [ ] Years [ ]
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Response when you started:
- Greatly improved [ ]
- Slightly improved [ ]
- Stayed the same [ ]
- Slightly worsened [ ]
- Greatly worsened [ ]
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Current response (if you’re still using the therapy/substance) OR Response in the time before you stopped the treatment
- Greatly improved [ ]
- Slightly improved [ ]
- Stayed the same [ ]
- Slightly worsened [ ]
- Greatly worsened [ ]
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Lasting changes to initial symptoms after cessation (if you have stopped for more than 3 weeks)
- Greatly improved [ ]
- Slightly improved [ ]
- Stayed the same [ ]
- Slightly worsened [ ]
- Greatly worsened [ ]