My Story - 33 Years Old

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)?

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?)

What is your current age, height, weight?

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, 3/days a week

What condition was being treated with the drug? hair loss

For how long did you take the drug (weeks/months/years)? 2 months

Date when you started the drug? January 2023

Date when you quit the drug? March 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? looking back on it i had side effects almost right away

What side effects did you experience that have yet to resolve since discontinuation? erectile dysfunction, anhedonia, joint pain, muscle wastage, focus issues, memory issues, tinnitus, acuity decrease & insomnia

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

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

Physical
[X ] Penile Tissue Changes (narrowing, shrinkage, wrinkled)
[ ] Penis curvature / rotation on axis
[X ] Testicular Pain
[X ] Testicular Shrinkage / Loss of Fullness
[X ] Genital numbness / sensitivity decrease
[ ] Weight Gain
[ ] Gynecomastia (male breasts)
[X ] Muscle Wastage
[ ] Muscle Weakness
[X ] Joint Pain
[X ] Dry / Dark Circles under eyes

Misc
[ ] Prostate pain
[ ] Persistent Fatigue / Exhaustion
[ ] Stomach Pains / Digestion Problems
[ ] 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

[ ] Other (please explain)

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)? N/A

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.

I started taking finasteride in January 2023. Before taking the drug I had stories online about PFS and was wary of taking the drug. However, I must admit, that I was so distressed and desperate regarding my hair loss that I decided to play russian roulette and take the drug.

While taking the drug I started noticing a loss of libido and depression kicking in but kept taking it because I read online that the side effects would go away with time.

I took finasteride for a month at a time twice, stopping in between when I noticed a loss of libido. At that time I didn’t realize that I had depression from the medication because I thought it was due to the mental struggle of dealing with hair loss.

After quitting finasteride in late March 2023, I crashed about about a week or two later. I suffered from depression and suicidal ideation for the first month and a half after quitting. I also experienced twitching and woke up one night with the left side of my body and head burning (I thought I was having a mini stroke).

During the first few months it felt like my brain wasn’t working at all. Luckily now I feel better mentally but I still can’t focus, my memory stinks, and I’m still dealing with anhedonia.

At this point, after being off the drug for two months, I’m still suffering from the aforementioned anhedonia + penile shrinkage, some insomnia, joint pain, focus issues, memory issues, muscle wastage, tinnitus, and visual acuity (which started happening about a week ago).

At this point I have no hope in my future and I don’t feel like this is going to go away. I’ve seen some posters say that only about 15% of people with side effects eventually get PFS but I’ve already been suffering from 2 months and the only things that have subsided are the depression and constant suicidal ideation.

If anyone has any info on the chances I will recover from this (since I’m technically not at the 3 month mark that denotes PFS) I’d love to hear it because at this point I’m hopeless and seriously considering ending it because I just can’t live like this my whole life.

I appreciate this community and I wish everyone the best. This isn’t fair and I hope that one day we can all recover from this chemical castration that has been inflicted on us by Big Pharma.

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
#2

Hi, sorry for your situation. As always remember to report your side effects. This drug is not a hairloss pill and needs to be stopped being sold as this, also it is not a good bph pill too. This is just last resort cancer drug and nothing else. Please don’t give up, things will probably get better. Also new studies are coming up in the future.

2 Likes
#3

After the 3 month mark the hormon leves and the intracellualar receptor levels are in the pre disruption equilibrium again. After that time the 85 % without more severe side effects and the majority of the estimated 15 % with more severe side effects go back to normal. Only 0.3 % to 2.3 % develope pfs, following the pfs network blog - The 6 most commonly asked questions about Post-Finasteride Syndrome:

One study estimated 1.4% of men who take finasteride experience persistent sexual dysfunction. This is only one symptomatic domain, however, and the study only evaluated a single source of medical records at Northwestern Medicine.

An investigative report by Reuters also discovered evidence of persistent sexual dysfunction in 5-year clinical trials for finasteride involving 323 men. The report found that at least 1 man, and potentially as many as 7, developed sexual dysfunction which persisted after stopping the drug. This estimates a rate of persistent side effects between 0.3% - 2.1%.

The following capter gives my view as a very common propecia help visitor over 2 years now. There seem to be some more recoveries over the first year. Following the users who apear, have some great efforts and than disapear or report their recovery. I know a case personally. Even over the years some pfs patients recover to close to normal state again. I know someone personally too.

But any statistical analysis is impossible because you cannot verify all the recovery stories. With coherend and well documented member stories there could be material for a statistical analysis. That and a statistical analysis what helped with the template could be very helpful too.

So you can join groups fighting for awareness, to warn new potential finasteride victims, join statistical relevant surveys and fundraising research projects or groups fighting for their own recovery by different protocols and techniques or both.

So you’re not allone with this incredible stressful situation.

#4

I thought if left after 31 days?

#5

The mean plasma elimination half-life of finasteride is 6 hours (range, 3 to 16 hours); however, the turnover rate for the type II 5-alpha-reductase enzyme complex is slow, with a turnover half-life of approximately 30 days.

Finasteride is off the system very quick. But the 5ar is blocked permanent. After 30 days half of the usual 5ar enzyms are expressed and assembled in the cell again and DHT level increases back to normal. With pfs the functionality of the AR not the 5ar is disabled.

1 Like
#6

I am a few weeks into this syndrome. 3 weeks actually. Is there a chance that I’ll be okay after 30 days?

#7

There are really some lucky ones, who said hello here and left the forum again. Hope it’s once just a nightmare of the past for you and you can enjoy life again.

1 Like
#8

Thank you! And regardless of what happens I’m going to use my voice and warn others!

2 Likes
#9

Thanks for the reply. So you’re saying even though I’m having more serious side effects there’s still a good chance I’m going to recover in the next month and not have PFS?

#10

This.

1 Like