KeepsRuiningLives' Story: New member, concerned but ready to fight, and looking for support

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?
29, 5 ft 10 in, 155 lbs

What specific drug did you use (finasteride, dutasteride, saw palmetto, isotretinoin/Accutane, fluoxetine, sertraline, citalopram, leuprorelin, etc…)?
Finasteride, saw palmetto shampoo

What dose did you take (eg. 1 mg/day, 1 mg every other day etc.)?
1 mg/day finasteride

What condition was being treated with the drug?
Male pattern baldness

For how long did you take the drug (weeks/months/years)?
Took 15 fin tablets over 22 days, 1 topical dose 12 days later. Used saw palmetto shampoo 17 times over 36 days.

Date when you started the drug?
July 31st, 2023

Date when you quit the drug?
September 3rd, 2023

Age when you quit?
29

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

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

First day

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
[ ] Watery Ejaculate
[ x] Reduced Ejaculate
[ ] Inability or Difficulty to Ejaculate / Orgasm
[ ] Reduced Sperm Count / Motility

Mental
[ x] Emotional Blunting / Emotionally Flat
[x ] 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
[ x] Extreme Anxiety / Panic Attacks
[x ] Severe Depression / Melancholy
[ ] Suicidal Thoughts

Physical
[ x] 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
[ x] Dry / Dark Circles under eyes

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

[x ] Other (please explain)
-Sleep quality has lessened
-Hand tremors

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

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.

Hi everyone,

I understand that this is very early to self diagnose for PFS. However, I’m sure many of you can recall the early days of concern after using this terrible, poisonous drug. I foolishly started taking this for my thinning hair after ordering it on keeps. I took 1 mg/a day for 2 days before I noticed having hand tremors, increased anxiety, and brain fog. I stopped taking it for 8 days until I could see my doctor, who advised it was probably related to a bad shrooms trip I had the week prior to starting finasteride. Assured (I thought) that it wasn’t the finasteride and no longer feeling the previous symptoms, I resumed taking it for 12 consecutive days. I again discontinued when these same symptoms returned. I mostly felt better (though not all the way) when I tried one topical dose 12 days after quitting the pill, after being told by my keeps consultant that the topical would have way less side effects. After that one dose, I immediately felt my anxiety heighten again, and have not used any form of finasteride since. Throughout that month, I also used a shampoo that had saw palmetto in it about 2-3 times a week. That has also been stopped the same time as the finasteride.

Today is day 29 off of all of it. Initially, my main issues were anxiety, brain fog, and the hand tremors. However, in the last 10 days or so, I have also started having issues with genital numbness, ED, losses of erections, and a bit of depression/low energy. I also am having less quality sleep (I can still get around 6-7 hours per night (melatonin helps), but consistently wake up around 3-4 am, which never occurred before.) Other than anxiety, I had none of these issues prior to this poison. I do workout 4 days a week (lifting and cardio), and have recently given up alcohol. My hope is of course to recover, but I want to be a part of this community no matter what my outcome is because this is an issue that needs more publicity, especially with the way this drug is marketed today. Candidly, I am afraid I’ve done permanent damage to myself, and the thought of that is unbearable. I hope to find support, solidarity, hope and advice on this site. And one day provide that to others as well. Thank you for taking the time to read!

Self-reporting template - ONLY USE FOR FUTURE POSTS TO REPORT ANY TRIALS OF TREATMENTS, NOT YOUR INITIAL MEMBER STORY

  1. Name of the therapy/substance:
    • Dosage:
    • How often you took it:
  2. Status
    • Still using [ ]
    • Stopped with no lasting change to initial symptoms [ ]
    • Stopped with persistent change to symptoms [ ]
  3. Duration of use: Days [ ] Months [ ] Years [ ]
  4. Response when you started:
    • Greatly improved [ ]
    • Slightly improved [ ]
    • Stayed the same [ ]
    • Slightly worsened [ ]
    • Greatly worsened [ ]
  5. 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 [ ]
  6. 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 [ ]
1 Like
My story, one year later
#2

Hey friend,

“Welcome”…

Good news: you’re still very very early (even though it probably already feels like a lifetime) and you have a very good chance you will improve with time. But it will take time. Be patient and be hopeful.

Technically, you’re not PFS just yet. The symptoms need to be persistent for at least 3 months after quitting. But even if you do end up with PFS, there is more good news.

You’ve entered this community at a moment where we are finally organising ourselves and actually researching the mechanism of this disease. The PFS Network is doing amazing work on that front, see a recent update here: https://www.pfsnetwork.org/blog/pfs-network-hosts-groups-first-research-conference-into-post-finasteride-syndrome

The scientists involved are absolutely top of the line, and they have taken a personal interest in our cause. We even have a full-time PhD student dedicated to PFS now.

But we must do our part too. Nobody is coming to save us if we don’t act.

  • Consider telling your story on the Moral Medicine youtube channel (reach out to @Erik), and
  • consider joining our fundraising whats app group (we’re 120 strong atm and have raised over 80k collectively).

Yes it sucks we have to fund it ourselves, but this is the first (and most important) step. We show the medical community this is serious by showing face and investing money, the first studies will be published, more researchers will be interested, this will lead to universities requesting grants for more studies, PFS will get recognized, eventually more grants and funding will happen or even litigation… and ultimately, a cure.

But it al starts with us. So consider getting involved. Together we are strong and will crush this disease. But only together.

4 Likes
#3

Well said Crembo.

Now’s the time to get involved and fight. We need you with us!

3 Likes
#4

Thank you both for replying. I am absolutely ready to do my part, including donating and speaking out.

In terms of my recovery/improvement, I have yet to make any changes other than dropping alcohol and trying to emphasize more sleep. I am wondering, in your guys’ opinion/experience, should I hold off on taking any supplements (just things like magnesium, vitamin D)? Also, I am wondering if I should seek a prescription for something like Cialis to keep my blood flow going down there? Or is it too early? I do plan to meet with a urologist soon. Is no fap a good idea? Sorry for all the questions, but any advice is definitely appreciated, especially from those with personal experience.

2 Likes
#5

Cialis daily is a good idea, discuss it with your doc.

Supplements, vitamins… they do not matter really, it won’t cure you. Have tried them all, as have many here.

Nofap is imo a bunch of bs. In fact, I’d say for us it is more important to keep trying to use the damn thing. Incidentally, I have tried nofap and if anything, abstinence made it worse.

2 Likes
#6

I appreciate that advice. I’m curious, is there a particular reason you have to wait 90 days to be considered PFS? I was told after 2 weeks you should be back to normal, so I’m confused if there’s a large enough recovery base between that 14 and 90 day mark to warrant that distinction?

#7

Everybody’s different of course, but the 3 months was agreed upon because most who pass that mark seem to have it for the long haul.

Even then recovery is possible but you cannot control it.

The best advice is live a normal healthy life and hope for the best.

Sounds great man. Shall I add you to the group? We post pictures every month of our donations and keep track. This raises morale. It’s a great group to be a part of, but only if you’re actually committed to donate of course. But frankly, everyone should be. Even if it is only 10€/$. Doesn’t matter.

I’m doing an interview on Moral Medicine too and many have done so already. It’s very important to give a face to this disease or no one will care. So reach out to Erik (moral medicine channel), or @Sugarhouse (pfs network channel).

If you wanna talk, hit me up.