My PFS experience

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)?
Canada
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?
35 5’8" 150lbs
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.)?
1mg day
What condition was being treated with the drug?

For how long did you take the drug (weeks/months/years)?
1 month
How old were you, and WHEN (date) did you start the drug?
35 sept 2020
How old were you when you quit, and WHEN (date) did you quit?
35 oct 2020
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 weeks
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
[X ] Loss of Morning Erections
[ x] Loss of Spontaneous Erections
[ x] Loss of Nocturnal Erections
[ x] Watery Ejaculate
[ x] Reduced Ejaculate
Inability or Difficulty to Ejaculate / Orgasm
Reduced Sperm Count / Motility

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

Physical
[X ] Penile Tissue Changes (narrowing, shrinkage, wrinkled)
Penis curvature / rotation on axis
Testicular Pain
Testicular Shrinkage / Loss of Fullness
[ x] Genital numbness / sensitivity decrease
Weight Gain
Gynecomastia (male breasts)
[ x] 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
[ x] Tinnitus (ringing or high pitched sound in ears)
Hearing loss
Increased hair loss
Frequent urination
Lowered body temperature

[X ] Other (please explain)
Dry skin, no hair loss, dry eyes, body composition changes, cracking joints

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?

Tell us your story, in your own words, about your usage and side effects experienced while on/off the drug.
The worst decision of my life

1 Like
#2

Hi @Titan1

I’m terribly sorry to hear about your experience. I myself only took finasteride for a month and experienced devastating effects as a result. I can tell you that many patients experience an uptick after the first 9 months, so please hang in there.

If you’re looking to contribute in a meaningful way, could you also please complete the patient survey, via the link at the top of the forum? It only takes about 30 minutes and will be invaluable for our research efforts.

We are also seeking patients for a new PFS video podcast the admins of this forum will begin soon, so if you would like to speak publicly, please get in touch via PM.

Thanks,
Mitch

#3

I completed the survey.
I seem to have blessed with full blown PFS (Androgen Receptor issues)
I also have pre-existing anxiety and depression so every doctor, friend and family member dont take me seriously when I tell them about my PFS. It’s actually the only thing I can talk about as my brain is stuck on it and nothing else matters. Anything outside of learning about PFS and thinking of ways to get better gives me anxiety. I am probably one of the worst cases. I have moved back with my parents and and sending them to an early grave. I connot control my emotions at all, Im either numb, hysterical and in a rage. I find interest in nothing anymore. My feelings are gone. Anything that reminds me of my past life gives me PTSD so I can even walk outside. I am getting worse by the day. I see only 2 routes right now. Suicide or the Mental Ward. Everybody I have told thinks Im delusional including the like 10 doctors Ive spoken to. This is truly the worst thing that could ever happen to a person. I have literally lost everything in a flash. It been 8 weeks now. I am on benzos for 6 weeks and mirtazapine but still cant sleep and anxiety is through the roof. Where is the hope? Because I certainly dont see any right now

2 Likes
#4

Hi!
I understand what your situation may seem unbearable, but I beg you not to rush into anything. No matter how bad the situation is, giving up is not the thing that going to help you or your family. I personally recommend you to take a break, remove any expectations and pressure from yourself. Say yourself “I’m crashed, ok? I need to rest, I need to stabilize and gather strength”. No matter how much time it will take, or what your parents will tell you, they don’t know your situation. You should take care of yourself.

Also please do not rely on benzos. It’s an emergency medication, any long run on these will harm you more. Consider talking with your doctor about low-dose neuroleptic. 1 mg flupentixol greatly helped me in the first weeks of anxiety and insomnia. But again do not rely on these medications in the long run. And don’t forget to eat well. Your body needs nutrients to restore itself.

Please don’t hesitate to post here about your situation. We are here to help.

1 Like
#5

Hi mate,

Everything will be okay. The next few months are likely going to be hard, but you need to stay strong, most people can and will recover significantly. It just takes time for the body to heal itself.

I too had to quit my job, move back in with my parents, I was so fucked up beyond believe from the damage this drug caused. I am now doing substantially better and I am confident I will make a full recovery with time.

It’s still very early days so it’s difficult to understand where your difficulties lie. You could simply be experiencing a hormone imbalance or an adrenal crash. Please try not to catasrophize. Do not spend hours and hours on end reading hopeless forum posts. You need to put your energy into recovering. You need to focus on doing good, healthy things, every single day. Give it time and be patient. Your body will heal from this.

A great starting point is to check out the youtube channel “Health Recovery” on Youtube. I made most of my progress when I started following his advice. He gives advice for CFS / ME / Adrenal fatigue, however it’s equally as applicable to your situation. You just need to focus on living the most healthy and stress free life as possible, eliminate as many burdens as possible to allow your body to heal. Cannot recommend Health Recovery enough.

I would highly advise against the use of benzos. They are very toxic drugs and the physical dependence will cause many issues for you down the track. No drug is obviously the best and recommended, however if you are desperate amitriptyline is a better choice for sleep.

Lastly, do not look for health in supplements. Supplements will not pull you out of this mess and may make you worse.

Feel free to message us any time.

1 Like
#6

I have crazy mood swings throughout the day. I go from being hystical, to rage to being completely numb. I also can’t cry tears, whoch I want to so bad because the emotion just gets trapped inside and gives me a headache. If I don’t take the benzo and mirtazapine, sleep is impossible. I really dont know how Im going to be able to come off the benzo as it seems like its the only thing that works somewhat for my anxiety. I get intense anxiety from doing things I used to enjoy. It makes living with this nearly impossible as I am stuck on PFS 99.9% of the time. I just started wellbutrin today to see if that help at all with the deep depression I am experiencing. The suicidal ideation I experience is persistant but I am too afraid of death and what it would do to my family. I’m at a complete loss right now as far as what to do to move forward. Woke up at least 20 times last night. I feel like Im at a breaking point

#7

You are definitely at a breaking point, but it is up to you if you break. I want to repeat my statement about removing any expectations and pressure from yourself right now. Because it’s not some empty words or folk wisdom, no, it is a working tactic to survive the hardest times. Your life is the only thing you need to worry about right now. Other things can wait.

I can assure you what you will feel better. I’m not talking about full recovery, nobody can guarantee you that. But the current mess will definitely end. You will touch some sort of baseline, from which you will be able to start doing something.

Also a quick remark about your medication. Don’t stress too much about benzo right now if it helps you. Just do not raise your dose if you can, and try to stick with the instruction about treatment duration. What I know about Mirtazapine and Wellbutrin, both of them is some sort of stimulating antidepressants. They may prevent you from sleep. Especially Wellbutrin, because norepinephrine and dopamine are very bad in the context of anxiety. However, serotonin can be beneficial, but sometimes it is not. Just be aware.