Dutasteride Induced Severe PFS - New Patient

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
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
[XX] 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
[X ] Extreme Anxiety / Panic Attacks
Severe Depression / Melancholy
[XX] 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
[XX] 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)

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.

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Even though you’ve told me about your condition I’m very sorry to read all this Matt. I wish we had met under different circumstances. I’m sure we would have been good friends either way. It’s harrowing reading your story and is all too relatable. The desire to keep one’s hair should not be weaponised and used to entrap innocent young men who are condemned to hell.

Please have faith, we will get ourselves out of this. Our community will be free of this nightmare one day.

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Hello,

You seem to have the same symptoms as me. I’m so sorry, I know how truly terrible this all is. If you ever want to talk, I’m here.

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Sorry to read your intro and membership to what is the unluckiest club on the planet. As you’ll have identified 1st hand repeated use is what brings pfs to a severe state.

You’ve had a few “even slight” improvements since your crash which is an encouraging sign.

I’ve been in this hell for over 2 decades and to be fair it only got so much worse with repeated exposure. The last 8 years have seen a decline in every aspect of my health.

Regardless I’m still here and fighting because I know as others do with a treatment it will be like flicking a switch and everything will come back on line. We’ll get our lives back. With pfs you see what actually matters, it’s extremely humbling, losing the very basics of human emotion ,such as love, laughter, happiness, belonging, confidence wanting to be around others is nothing short of barbaric but with them back we’d never take another moment for granted.

You’re joining when there is hope, imminent research which will lead to treatment one day one thing is for sure with being so new to this you have time on your side so don’t give up u will get out of this and will have you health and life restored.

Coping mechanisms, avoid stressful situations, don’t try to hang on to the old you, it brings more pain. no one understands the brutality or magnitude of this. It brings pain putting an act on when you can no longer relate, trying to convince people, the stigmatism and hurt which is widely reported on here!!! Put your efforts into alternative experiences even if we cannot feel reward anymore doing things for others brings a calm to the storm. It re affirms that no matter how bad this is you can still have a place, purpose in this world. A simple act of kindness will never be forgotten by the recipient. It’s so easy.

Look at you diet what is considered very healthy can actually blow some of us apart. 5ari foods etc. There’s plenty of info on here. Don’t experiment no matter how desperate. Hormonal and other interventions have made many much worse.

Turn to God even if you don’t believe praying for healing and direction, forgiving, even Merck for destroying your life helps douse the fires of disregulated hormonal and neurosteroidal levels. Its one of the few things God asks of you is to forgive. Above all know you will get out of this. All is not lost. With this behind you. Imagine the life that awaits you.

Low Dopamine brings the suicidal thoughts, it’s smoke and mirrors not reality. Fuck this dont let it rule your life if you can accept even just some of it it will help with how you move forward Fighting against the horrors of this only makes things more difficult and puts you in an even more distressed state.The hormonal disregulation looks for feeders blame, anger, irritability etc etc seek calm and tranquility to counter you bodies new baseline. God is my place of safety. He does not challenge or dispute.

You’ll make it out of this better and stronger. Hang on in there my friend. Happy to talk anytime. You’re in the right place where you get validation and support.

Laz

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Hope gen editing and treatment of epigenetical disregulation will improve fast as a biochemical revolution. And the young ones have a cure once.

I sit at home and stare against the wall. I lost my relationship and nearly all my friends because I feel ashamed about my state, lay in bed half the day and most days unable to leave the house.

Mentally I have the same symptoms and the same desperate feeling like you. As a younger patient it’s more horrible to be affected, but
you can have some hope for a cure in the future. And I hope to see every Merck and Finasterid Marketing employee in hell again have the eternity for never ending torture them all.

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Matthew, your entire report is familiar to most of us. I see many here that have an artistic bent, either as musicians, writers or other creators of beautiful substance.

You said you feel 100 years old. There has been a belief that we are beset with accelerated aging, and there is a thread here discussing that.

It sounds cliche to say I feel your pain and hope you heal with time, but I and all others here wish you an unexpectedly quick recovery.

Finally, ignore the urges to end your misery. Many here battle that call daily. Fight through it, one day at a time, as they say. Jim

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I believe that after having passed through all of that you have earned the right to consider yourself though, so congrats, not everyone would have survived such torture.
As others have mentioned, the fact alone that you have experienced improvements to some level is a very good sign, though if you want to fully recover I would personally recommend avoiding antidepressants (common mistake) and focusing on a healthy lifestyle (not necessarily will help you with the condition really, but nobody has ever got worse by that, and in some cases it has been said to be an important factor in some recovery cases).
I wish you the best of luck, and remember that giving up now after struggling so much would send all those efforts into the trash.

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