PFS upon cessation after almost a decade of use

Member Stories
#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?

34, 6’0 , 185

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.)?

1.25 mg everyday

What condition was being treated with the drug?

MPB

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

One brief stint in college for 1 month. Then again close to a decade.

Date when you started the drug?

2015

Date when you quit the drug?

July 2023

Age when you quit?

33

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

Cold Turkey

How long into your usage did you notice the onset of side effects?

I didn’t notice much at the time but I believe I had lowered libido and lack of sensitivity while on the drug. I also developed some minor to moderate situational anxiety while on the drug but never directly considered finasteride as the reason.

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

Lots

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
[X ] Emotional Blunting / Emotionally Flat
[X ] Difficulty Focusing / Concentrating
[ ] Confusion
[X ] Forgetfulness
[ ] Stumbling over Words / Losing Train of Thought
[ ] Slurring of Speech
[X ] Lack of Motivation / Feeling Passive / Complacency
[X ] Anxiety
[X ] Severe Depression / Melancholy
[X] 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
[X ] Muscle Weakness
[X ] Joint Pain
[ ] Dry / Dark Circles under eyes

Misc
[ ] Prostate pain
[X] Persistent Fatigue / Exhaustion
[X] Digestion Problems (Almost all foods give me indigestion)
[ ] Constipation / “Poo Pellets”
[X ] Vision - Acuity Decrease / Blurriness
[X ] Tinnitus (ringing or high pitched sound in ears)
[ ] Hearing loss
[ ] Increased hair loss
[ ] Frequent urination
[ ] Lowered body temperature

[ X] Other (please explain) Cold feet/hands, dry skin, ear issues , muscle pain, noise sensitivity

What (if any) treatments have you undertaken to recover from your side effects since discontinuation of the drug?

I have avoided all medicines, supplements, etc. Only thing I’ve tried is acupuncture

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)?

Haven’t had hormones checked but blood results show low vitamin D.

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.

Like many, I have never created an account here but lurked frequently. I always hoped I would magically heal before ever doing so. I have posted on Reddit and I’m sure many have already read my story over there. For those that haven’t here it is.

In mid ‘23 I had a dentistry issue arise, which was the catalyst for me taking a break from Finasteride. I started feeling very strange around this time. I naively thought I was having a bad reaction to the meds from the dentist or from the sinus issues the infected tooth caused. My hypothesis was not far-fetched as I am med sensitive after quitting another pharmaceutical called Gabapentin several years back. The muddy waters I was traversing kept me from seeing the true culprit, Finasteride.

Keep in mind I wasn’t really aware of PFS. I thought that just had to do with ED if you got that side when you started treatment. Five weeks after my break, I took another single dose of finasteride. After swallowing that final dose immediate regret ensued from my disdain for pharmaceuticals. I threw out my pills and told my girlfriend I think I’ll just go bald…

In a few days I started to feel way worse than I did initially. I lost my appetite completely and could barely swallow food. I felt so bad I wondered to myself if I had been poisoned. I knew I hadn’t, but I couldn’t think of anything that I had been doing that could cause such a strong response. I just kept trucking along.

Then one morning I woke up and the whole room was spinning. I told my employer I would be going on leave and haven’t been back since. This period of time was absolutely insane. I still didn’t know it was from the Finasteride, but I was so disorientated and felt so bad I was trying to prepare a will. I didn’t recognize myself and wanted to admit myself into a psychiatric ward. Thankfully, my girlfriend knew better and didn’t allow that to happen. They would’ve just pumped me full of drugs.

It wasn’t until I got testicular pain that I discovered what I was dealing with was PFS. It all made sense once I did because my libido was completely gone, semen volume was reduced to almost nothing, and orgasms came with no pleasure. Luckily, all my sexual sides recovered extremely quick even though that’s the last thing I care about. I’m not sure how I get hit so hard and didn’t get the full gamut of sexual sides.

The next few months after that final pill were followed with extreme insomnia, feelings of fear, thoughts of suicide, akathisia, etc. The complete inability to relax. Nothing felt comfortable or safe. I constantly had to walk around as I just couldn’t sit.

Thought I was stabilizing as I’ve seen improvement in some areas. I no longer pace around. I can relax and watch tv/movies much easier than before. I can get a pretty decent night of rest. I no longer have hypnic jerks when falling asleep and my arms don’t go numb anymore.

Then about 10 days ago I woke up with a clogged right ear. Three days later it transferred to the left ear. Now the fullness bounces back and forth between the two with some periods of remission throughout the day… So not sure if I will continue to get new symptoms.

After reading many member stories, I realize I had a horrible crash compared to most. I don’t see myself being able to live long-term in my current state, but I will just keep putting the days behind me in hope for a miraculous recovery. I already put out a video of my story to help spread awareness. Not much else I can do!

3 Likes
#2

Sorry to hear your going through this. I had a similar crash and two years on I’m just hanging in there.

1 Like
#3

What medication did the dentist put you on?

Very sorry this is happening to you

1 Like
#4

Thanks man. Nothing even crazy… I don’t take meds at all though so this was a lot. It was a tooth that needed a root canal which failed and eventually needed extracted. Over the 7 appointments I had I was using Orajel, OTC pain meds, and I took a klonopin for one of the appointments. The dental anesthesia they used in 3 of the appointments were Septocaine, Carbocaine, and Mepivacaine. They also gave me antibiotics but I refused to take them and my body cleared the infection on its own.

#5

What adjustments have you made to alleviate symptoms?

Diet, exercise, etc?

I’m new here. I crashed on Tuesday last week and I’m trying to find my baseline.

Crashed on Tuesday and was on the carnivore diet by Thursday. Didn’t sleep Tuesday, Wednesday, Thursday night. But by Friday and Saturday, with some intense breathing exercises, magnesium and melatonin. I have been about to get four hours both nights. Saunas and cold showers 2x a day have really calmed down my central nervous system.

Breathing exercises can snap me out of a dark mood. For an hour or two.

I don’t know what else to do at this point but just sharing in case it helps.

#6

I would guess you will be able to sleep naturally sooner than later. Mine came back all on its own after quite a few weeks of insomnia. Here are the things below I have tried so far.

Acupuncture:

Increased mood but increased dizziness

Exercise:

I tried exercising at the very beginning but I was super weak and having bad joint/muscle pain… Gave that a rest for a few months but I have returned to the gym now. I usually do light cardio for 20-30 mins and a few weight training exercises followed by a massage after. It does seem to improve my mood after as well as help with breaking up the day. It’s slightly annoying taking it easy because I used to lift consistently and heavily. Last week I had two days where I felt above my baseline and I lifted heavy one day, played tennis the next, and did several hours worth of doubles pickle ball after that. Unfortunately, that seemed to be too intense for my system and crashed me a few hours after getting done. From now on I will cut back on the intensity because the uptick in symptoms was very apparent. Will be going to a different gym soon that has a steam room and sauna.

Diet:

I cook whole foods for dinner every night. For lunch I try to eat at home as well but about half the time it’s purchased from somewhere else. I only drink water and cut out sugar. Early on I cut out dairy in attempt to help with inflammation but it doesn’t seem to make a noticeable difference, so I no longer avoid it. Next up would be looking at cutting out gluten. I also have a list of foods posted here that I avoid.

Soy
Dark Chocolate
Kale
Avocados
Coconut / Coconut Oil
Neetle Root ( not even sure what that is)
Mint
Blueberries
Green Tea
Brown Rice
Tomatoes
Corn
Turmeric (used in lots of spice blends)

1 Like
#7

Thanks for the response. I’m going extreme with my diet. When I say carnivore, I’m going as hardcore as I can. The basic idea I’m trying to stress test is - put the body in survival mode with strict ketosis. I want my body to get used to fueling itself on fat, water and salt.

I had a terrible gut when I crashed and that’s all gone. I had creaky back and knuckles but that’s subsiding. I’m aware all of these things could come crashing back (it’s only been four days). But having read all the success story posts I realize there’s only 4 real things I can do

  1. try and reclaim my sleep - but without using pharma
  2. 20 min aerobic exercise in the morning followed by short weight lifting sets
  3. strict diet
  4. sauna/ice cold showers

If those 4 things can give my depression/lack of motivation and sleep a boost, I’ll worry about my dick after that.

1 Like
#8

Several days after posting this both my ears clog free. I’m so thankful as I thought I might have to deal with that one permanently. Not sure if this is a factor but it started right around the time I introduced milk to my diet. Hope that is gone for good as it was very disorientating.

#9

The ear fullness was never in both ears at the same time but it could bounce from ear to ear. At one point it was so bad that other voices, as well as mine, were starting to sound like someone was speaking through the back of a fan or super robotic. Voices no longer sound robotic but I do have a handful of ear symptoms that come and go with my ups and downs. The medical term for this is eustachian tube dysfunction. I have all of the symptoms below off and on in various intensities.

Tinnitus, or ringing in your ears.
Clicking or popping sounds.
A feeling of fullness in your ears.
Pain that mimics an ear infection.
Dizziness or vertigo

#10

For me that one is almost gone, no longer feeling any pressure normally with a very minimal spikes in the ear that was affected the most but I still have somewhat increased tinnitus in the one that was worse. For me it was my right ear that got largely destroyed by this. My left would sometimes have the pressure transfer to it but it never stayed there and it didn’t have much tinnitus at all.

How are you otherwise doing right now in general? I haven’t read your story before but you have a lot of what I was dealing with. For me the sexual dysfunction just came with package and was more severe in my case. Now it’s working at some at least tolerable baseline but generally I’m having a lot of energy problems with some anhedonic slumps.

#11

That’s always a tough question. Feels like SOME symptoms have improved but I still have dozens of symptoms that can appear whenever they want. Exercise and orgasm are two big things that crash me very easily. I’m trying to learn how to live my life to mitigate symptoms the best I can. Would love to get back to work sooner than later. The lack of purpose feeling can get to me sometimes but I try to not think too far ahead or before. Physically, my muscle pain and joint pain have diminished in intensity but both can flare. One of my more major issues would be muscle weakness. Muscles get fatigued and burning sensation doing simply manual labor tasks. If i go too hard I will likely feel like i’ve been hit by a truck for days after. It’s strange learning a completely new body at 34.

1 Like
#12

Feel like I should update here more often. So a few weeks ago I decided to break my nofap streak. Orgasm felt great (like the first happy chemicals i’ve had in forever) but within 30 mins after my extremities got a numb/tingling sensation, and I knew something was brewing. Mental status seemed to increase for a day or two where I felt better mood, but following that I crashed and saw an increase in decent amount of symptoms. It started with a dry skin sensation to the point where I felt like I needed to apply lotion before I could sleep. Then the insomnia came back as well as a big increase in suicidal ideation. What i’m talking about here is these dark thoughts when you are like half awake in the morning. It’s the weirdest thing. When I crash I seem to get burning mouth syndrome as well. Just found the term for that recently but it’s like a burning feeling on the tip of your tongue. The damage this drug has the capability of causing is astounding.

2 Likes
#13

Probably had my first big screw up like 5 days ago. Been in the city for the past month or so and doing a lot of walking. This has been tremendously hard on my body. Muscle soreness has been next level and my body in no way functions or recovers like it used to.

Ended up deciding to get a leg & foot massage to help. The masseuse uses what at the time looked like vasoline all over. I was a bit apprehensive but just went with the flow. Within in a hour of getting the massage I started get pangs of anxiety but tried to shrug it off. Got back to my place and tried to watch some baseball, but I felt like the need to go out for fresh air as the anxiety felt like it was growing.

From there the crash started and have seen an uptick in lots of symptoms (nasal congestion, head pressure/headaches, blank brain feeling, clogged ears, deep sadness). At this point I had to go back to the massage parlor because I was super curious as to what was used. She told me they use a Chinese ginger paste for the foot massages as it allegedly increases blood flow. I tried looking up the product on google to see exactly what else was in it but to no avail.

It has been pretty disheartening having a self-inflicted setback after a soul crushing year. Hope whatever the hell was in that massage concoction doesn’t permanently worsen my state. Will have to be even more vigilant from here on out.

1 Like
#14

Waiting, your symptoms and story sound so much like mine. My symptoms were caused by cessation of fin, and my problems were primarily neurological. I think you’re potentially also experiencing a high level of paranoia that I also experienced. I was extremely up and down as well on my way to recovery. Just happened across your story and wanted to point out the similarities in case I may be able to help in some small way.

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#15

I agree Henchman. Your story was one of the first I came across and a source of hope because we both suffered heavily from akathisia. Unfortunately, I feel like taking an additional pill after having somewhat bad PFS was the nail in my coffin and the main difference between our cases. I’ve worked since I was fourteen and always been a serious weightlifter. It’s been close to a year since I’ve been able to do either of those things which is the complete opposite of who I am. Pretty much the things that have gotten better is my crazy crash symptoms like akathisia, vomiting from nausea, zero appetite, cold body, insomnia, and hypnic jerks. Without those things, which I’m very grateful for, there is no way I would have made it out of the first year alive. Just seems like improvement has plateaued and I truly don’t know if I can make it years in this condition. Feels like I’m 100% dependent on a treatment/cure. Somedays I have more hope than others.

#16

I’m glad you’ve improved, hopefully you continue to improve like I did. Or better yet, we all get a cure. I wouldn’t blame anyone for any choices they make about living in the state you’re in. I sincerely hope for you that it doesn’t come to that.

Wishing you the best. I’m here if you ever need to talk.

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#17

Thanks man I’ll keep that in mind. Hope your symptoms abate soon and you can put this behind you too.

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#18

Muscles don’t appear to be doing well lately. Jaw muscles seem to tire out when eating foods that require a bit more chewing, and I notice I clench my jaw a lot. Ordered a night guard to sleep with to help with that. Other targeted muscle issue I’m having is core weakness. My abs feel like I did a bunch of sit-ups the day before after an extended break of physical activity. Hope it’s just a fluctuation of the wide array of issues PFS can cause, but I’m naturally worried it’s the start of more issues to come. The only positive is I still have my stockier build to me so my muscles aren’t wasting away even though they are not working correctly.