Introduction- Wegotyou

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?) Reddit PFS forum

What is your current age, height, weight? 33, 5’11, 180

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?
Hair loss

For how long did you take the drug (weeks/months/years)? I took fin for 5 months then took both fin and topical minoxidil for 2 subsequent months. So 7 months total on fin with the last 2 months having added topical minoxidil

How old were you, and WHEN (date) did you start the drug? 32, Nov 2020

How old were you when you quit, and WHEN (date) did you quit? Jun 2021

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

How long into your usage did you notice the onset of side effects? 7 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
[x] Reduced Ejaculate
[ ] Inability or Difficulty to Ejaculate / Orgasm
[ ] Reduced Sperm Count / Motility

Mental
[ ] Emotional Blunting / Emotionally Flat
[ ] Difficulty Focusing / Concentrating
[ ] Confusion
[ ] Memory Loss / Forgetfulness
[x] Stumbling over Words / Losing Train of Thought
[ ] Slurring of Speech
[x] 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
[x] Testicular Shrinkage / Loss of Fullness
[x] 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? Multiple supplements to no avail.

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)? None

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.

Hi everyone,

Some may find my story reassuring and some may find it depressing so fair warning before reading on.

I wanted to express my gratitude and admiration for those of you on this forum that are managing to continue on with life as best you can. Your stories have kept me going which is why I decided to join and share my story in case it helps others.

I took oral fin for 5 months then took both oral fin and topical minoxidil for 2 subsequent months. So 7 months total on fin with the last 2 months having added topical minoxidil.

I immediately stopped everything 7 months in after experiencing smaller erections and flaccid shrinkage. Things got worse. Emotional bluntness, zombie like, lack of concentration, losing piano skills, zero libido, slight testicular shrinkage, severe ED, weight loss of 15 pounds with same diet but has stabilized for now (meat/poultry, beans and rice). I was on SSRIs for years but stopped for 6 months before starting finasteride.

Never saw a doctor because I’ve read they’re is little they can do unless you are open to TRT etc. I am now 6 weeks in and have recovered a bit except for penile/testicular shrinkage, ED (can only get erections laying on my back that go away instantly on standing-possibly due to venous leakage or penile tissue alteration or insufficient smooth muscle relaxation - don’t know for sure and doesn’t really matter since there’s no cure for these). I have crappy health insurance anyway.

My mental issues have cleared up except for constant anxiety about my ED so I’ve been exercising 4x a week to address this, (2 days light 2 mile runs and 2 days moderate weightlifting).

Considering my ED isn’t improving much except for slightly bigger erections, I’m resigned to relying on ED meds long-term which seem to help me for a few minutes to have sex. Although I’m avoiding sex out of fear I might not be able to perform and have no practice with ED meds as I was always able to perform in bed before fin. I also don’t feel great on slidenafil/viagra. Nothing life threatening just makes me feel weird.

I’ve tried a wide array of supplements but can’t say if they help. Sunlight exposure seems to help overall but who knows.

I’ll update in a month or so just in case someone is interested

Happy to answer any questions or offer emotional support. Feel free to message me. I want to be a help to anyone in need, it gives me purpose. I love how supportive this forum seems to be, you’re good guys and don’t deserve this.

5 Likes
#2

Welcome to the forum, and I’m sorry to hear about your situation.

When you have some time, could you please help with our research efforts by completing the patient survey? You can do so by clicking the graph icon next to the search icon in the top right of your screen.

Best,
Mitch

#3
#4

waiting your update！

#5

If anyone has any info or previous threads about this kind of thing that would help.

Updating after 8.5 months for help.

I was on fin for 7 months and have been off of it for 8.5 months now. I had a bad crash which led to me stopping fin but 3 months later I ended up being a “moderate” case. I now only have floaters, blurred vision, moderate ED, fluctuating balls, TMJ, periodic high morning anxiety, and depression. Hands are recently dry and cracking to wounds. My energy has continued to improve but could be because I’m just lighter. My cognition/intelligence continues to drastically improve (after it was was obliterated during and after my crash).

I also lost almost 25 pounds since stopping fin. The weight loss APPEARED to slow a couple months ago but seems to be picking up again. I usually weigh 190 prefin and I’m 167 pounds now. Losing 1-2 pounds a week now. I still have a bit of muscle but it’s decreasing and def less fat. I’m trying eat as much as possible but even resorting to a big protein lunch and large pizza for dinner isn’t slowing this down. I just realized I can handle lifting weights again and started yesterday. I’m getting some BCAAs soon.

But if this doesn’t stop I may have to try hormones for the first time even if they are dangerous and probably useless. Not sure what to do. I have no hormone/cortisol tests but may have to finally breakdown and get some only to be told I’m perfectly healthy. My TSH was 0.76, in range (.40 to 4.50) but seemed low. Everything else was fine. Blood glucose slightly high but same since prefin.

I’m only on 3000mg arginine and 120mg Pycogenol for 1 week so far. ED has been better but not sure if it’s the supps or this woman I’ve been seeing (no sex yet, she wants to wait but I’m deteriorating lol). Will probably start a new job soon after having an interview so I’ll have more money to donate.

I might be on my way to Severe PFS Town. I’m just surprised it took this long. Thanks for reading. Some of you guys write very beautifully about your experience but I have to write very objectively about this for some reason. Sorry if it’s a dry read.

2 Likes
#6

That’s some crazy weight loss! Would you say you were skinny before this started?

I’d be curious to see what happens if you go to the gym. I think things can stabilize if you’re able to do strength training a few times a week.

I’m having trouble gaining weight too, but it’s not anywhere near as intense as this. Also, gaining weight in a healthy way, with PFS, is a really tough dietary challenge.

1 Like
#7

I was 6 foot and 190 lbs. Maybe 25% body fat? Now I’m under 20%? Not sure if the % is accurate but you get the idea. I’m gonna get a other pizza today lol Probably a stupid idea but I got nothin else to try. Eating healthy and high calorie has done fuck all. Will lift weights tomorrow, Full Body. Rest day today.

I’ve always had muscle naturally even without exercising for months. Maybe I just have to work for it now. Will update how lifting weights goes. It’s nice to be able to lift without crashing for once.

Thanks for the response!

2 Likes
#8

Yea, anyone who is able to exercise with PFS should consider themselves lucky. Exercise helps in a lot of different ways.

1 Like
#9

If you want amino acids get EAA, BCAA is useless got muscle building. It’s been known for years that BCAA is in best case useless and in worst case actually detrimental for health. Just those 4 amino acids in BCAA can’t build muscle.

Also your TSH is totally fine if you’re T4/T3 also is in range. The golden spot for TSH is around 1.

1 Like
#10

Thanks so much! I’m getting EAA, I always confuse them with BCAA but thanks for clarifying in case others read this. Thanks for the thyroid info!

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#11

Any ideas on my weight loss? I am basically losing 1 pound a day now and am honestly freaking out. I haven’t accepted I may be a severe case because I still feel strong.

#12

No idea, are you losing fat or muscle?

Did you test your T3/T4 thyroid?

#13

I did not test that. What’s the relevance to my issue if you don’t mind my asking? I have way more muscle than fat. 166 lbs 6’0. Fat loss is exceeding muscle loss basically.

#14

Was just thinking maybe you’ve gotten hyperthyroid, but TSH is usually < 0.4 then IIRC. It’s possible to have it even with higher TSH though.

1 Like
#15

Thought I’d give a little update. My weight loss stopped about 3 weeks ago and I’m able to maintain at around 175lb which is great and alot less scary than losing 1lb a day. I don’t know why the weight loss stopped. I don’t eat an insanely high amount of calories anymore. It’s possible my increased alcohol consumption after my breakup was a factor but who knows. Crazy to have no control over such things.

Regarding my moderate ED, I’ve been taking Cialis every 3-4 days the past 2 months to help with penile health and ED. A recent improvement I’ve had the past few days is although I still need a bit of manual stimulation to keep an erection, I’m recently able to maintain it while laying on my stomach which was 100% impossible ever since PFS started even with 10mg Cialis. Before I could only keep an erection lying on my back. I can now keep an erection in any position! This is 10 months after quitting fin. So pretty happy about that.

I have a new job which pays enough for me to take care of myself. That’s part of why I’ve been MIA for awhile. I also do yoga meetups 3x a week. Really happy I can finally use my brain and keep a mentally demanding job. Let’s hope I can keep this up, no pun intended.

Persistent symptoms: tinnitus and eye floaters both of which I learned to ignore, vision blurs when tired, intermittent gyno chest pain when exhausted or “crashing”, low stamina (no way I’ll ever run 7 miles again), intermittent speech issues (mainly light stuttering), TMJ issues, severe depression. Morning anxiety is all but gone thankfully.

1 Like