Should have stopped months ago - overkilled's story

Member Stories
#1

Where are you from (country)?
United States of America

How did you find this forum?
Google search

What is your current age, height, weight?
32 years old, 5 feet 10 inches tall, weight 155 pounds

What specific drug did you use?
Finasteride

What dose did you take?
1 mg/day

What condition was being treated with the drug?
Androgenic alopecia (male pattern baldness)

For how long did you take the drug?
11 months

Date when you started the drug?
4 October 2020

Date when you quit the drug?
11 September 2021

Age when you quit?
32

How did you quit?
Cold turkey

How long into your usage did you notice the onset of side effects?
2-6 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
[X] Loss of Spontaneous Erections
[ ] Loss of Nocturnal Erections
[ ] Watery Ejaculate
[X] Reduced Ejaculate
[X] 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
[ ] 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)
[ ] 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?
None

If you have pre or post-drug blood tests, what hormonal changes have you encountered since discontinuing the drug?
Post-drug, have tested total testosterone, thyroid simulating hormone, and prolactin - all within normal range.

Anything not listed in the above questions you’d like to share about your experience?
I have bipolar disorder, for which I am taking cariprazine and bupropion. Cariprazine is not known to cause sexual side effects.

Tell us your story, in your own words, about your usage and side effects experienced while on/off the drug.

I saw my general practitioner (GP) in late September of 2020 to address concerns I had about my blood pressure. At the same time, I mentioned concerns about my alopecia and requested a finasteride prescription, which was granted. At that time, I was not aware that the FDA label included warnings about persistent side effects - I would not have started treatment had I been aware of this. I had heard rumors online but dismissed them as unsubstantiated. My doctor also indicated that none of his patients had experienced side effects.

I filled the finasteride prescription in early October; the drug sheet I received from my pharmacy also did not mention persistent side effects.

By December of 2020 I had noticed a reduction in the quality of my erections, but was unsure as to whether they were caused by the finasteride, the blood pressure medication I was then taking, or simply my imagination. I experimented with discontinuing the finasteride for around 2 weeks but only noticed increased shedding of hair with no improvement to my erections; after this I resumed the finasteride treatment and resolved not to discontinue again absent evidence as the shedding was rather severe.

By January 2021 I had noticed a reduction in genital sensation. I was not aware that finasteride could cause this (it is still not mentioned any of the official labeling, to my knowledge) and instead suspected my masturbation style.

In February of 2021 I failed to achieve erection while masturbating for the first time in my life. I suspected my blood pressure medication and requested changes from my GP, who complied.

In the spring of 2021 I noted that the expected rush in my groin when seeing an attractive woman was no longer present. I dismissed this as likely due to aging or stress.

In late spring of 2021, I experienced an abrupt, further reduction in genital sensation and a sudden loss of libido. In retrospect this could be characterized as a “crash”. I attributed these to continued use of the same masturbation style, and stress as I was in the process of moving to a new city at the time. I also sank into a deep depression around this time, which I also attributed to the stress of the move.

In September of 2021, I saw a new GP and mentioned my mild ED and loss of genital sensation. To their credit, my new GP indicated that both could be caused by finasteride and advised immediate discontinuation. The same new GP noted that the blood pressure medication I had been prescribed by my previous GP was not warranted and began the process of titrating those medications down.

Although initially hesitant, I complied and discontinued finasteride after noticing a possible reduction in semen volume. Around the same time, I also started to suspect a reduction in the size of my flaccid penis, of which I am still uncertain.

It has now been over five months since discontinuing finasteride and the primary symptoms of ED and loss of sensation have not improved. As a single man, I am severely distressed by this.

#2

Hi @overkilled

Thanks for joining and I’m sorry to hear your story. I’d recommend starting by reading our new user guide: New user? START HERE

Please know you are still in the relatively early stages and many patients experience improvements over time to varying degrees.

Also know that there is meaningful scientific research taking place this year, and significant momentum for the issue at large.

Feel free to reach out if you’d like to chat.

#3

The same story again and again. Criminal doctors who doesn’t inform their patients about the persistent sideeffects. Patients who believe them. A gaslighting package leaflet. And we super ideots haven’t checked the internet. It’s so full of warnings, that it’s impossible to take this killing pills. I check the internet for every sunscreen, for nano particles in products and than I took this poison without any check.

In Germany there is a warning about persistent side effects of Finasteride too. A do called Red Hand Letter, which doctors force to warn patients. But my doctor gave me a pharma muster package just to try, after I mentioned I’m in s sexual active relationship and he had said ok than better not. An absolutely crime. He died on Covid later. His colleges i sued with a layer.

But know the dramatic part of the story. Like an ideot I took the packages with me cause I can do something good for my prostate. What a crazy insane and shizophrenic thought. I was in love and planed a long relationship. I had to deny, cause he first said better not. But I didn’t.

Than one night we stressed, I drove home and thought it’s over. And than I took the package in a bad reaction. But I studied the package leaflet. And the advice of persistent sideeffects was gaslighting clear washed.

This criminals didn’t write in rare cases persistent ED after quitting. They wrote ED can persist after quitting. Persistent ED is even for the last fool on earth a long time effect. But it can persist after quitting, is a may be, may be not washed advice. And I thought OK not so dangerous, maybe two weeks and everything is Ok again. This criminal gaslighting killed my life.

1 Like
#4

Self-reporting template

  1. Name of the therapy/substance: Bupropion
    • Dosage: 100 mg
    • How often you took it: Twice daily
  2. Status
    • Still using [X]
    • Stopped with no lasting change to initial symptoms [ ]
    • Stopped with persistent change to symptoms [ ]
  3. Duration of use: Days [21] Months [ ] Years [ ]
  4. Response when you started:
    • Greatly improved [X]
    • Slightly improved [ ]
    • Stayed the same [ ]
    • Slightly worsened [ ]
    • Greatly worsened [ ]
  5. Current response
    • Greatly improved [X]
    • Slightly improved [ ]
    • Stayed the same [ ]
    • Slightly worsened [ ]
    • Greatly worsened [ ]

Bupropion has been a great help in alleviating my depression symptoms and has noticeably increased my libido. Effect on all other symptoms (including genital numbness) has been negligible.

Please note I have bipolar disorder, and the medication is dispensed for that alone. I would not recommend it to others who have not been professionally diagnosed with depression.

1 Like
#5

The rough equivalent in the US is a black box warning. I’m a little shocked that fin doesn’t have one here! I understand the PFS Foundation is suing with the intent of getting one added.

#6

Thanks @Sugarhouse, really appreciate it. I’m concerned because this paper proposes a 3 month window for spontaneous recovery, though I do understand that duration is somewhat arbitrary.

#7

Another post to check in -

Although my initial post in this thread fails to mention it, I had also been using topical minoxidil (5% solution) for quite some time when my symptoms developed. I had been using the same on and off for several years without any apparent issues. However, after having read several accounts of minoxidil causing further issues in PFS patients (or even causing post drug syndrome on its own) I discontinued this as well.

It has now been several weeks since I discontinued minoxidil and I have not noticed any improvement in my symptoms. (On a lesser note I have also not noticed any significant increase in the thinning of my hair.)

Independently, I appear to have acquired a sporadic dull pain in the shaft of my penis. I have not identified a clear trigger for this, though it seems to increase with urinary urgency and is usually relieved by urination once it manifests. Given the time that has elapsed since finasteride discontinuation, it is not clear to me that this is PFS related.

Finally, I have managed to secure a referral to one of the top urology practices in my area (my doctor has had contact with the likes of Yacov Reisman and David Healy, so he should at least have some exposure to PFS). I am not expecting much but plan to post another update regardless.

#8

I completed 1 round of consultation with a urology practice this week. As expected, the outcome was inconclusive.

First, for context, I should first note that I had further discussed my symptoms with my GP at 2 separate follow-up visits in November 2021 and March 2022. At the November 2021 visit with my GP, they responded by to continued complaint of ED by performing a basic genital exam, which found no issues. My GP counseled me that, given my continued ability to sustain an erection (if unreliably) and ejaculate, my issues were likely to be transient and improve with time. I given a prescription for sildenafil to trial if I felt it was needed. It was also at this point that blood tests were ordered - my GP indicated total testosterone among others, adding prolactin as well per my suggestion. (All blood tests were later found to be within normal range.)

I subsequently trialed sildenafil on a handful of occasions and noted that it improved my erection quality to pre-finasteride levels at those times. However, I have found the requirement to take the drug 1 hour prior to sexual activity to be onerous, given that I am not currently seeing anyone, and have neither continued to use it consistently nor bothered to make a full self-report on it here, given the limited number of trials.

At the March 2022 visit with my GP, I noted that my ED, low libido, and genital sensitivity decrease had not markedly improved since finasteride discontinuation. At this time I also provided references to a few studies concerning PFS ([1] [2] [3]). My GP responded by performing another genital exam and additionally confirming that I was able to register touch at a few points in my lower body. To their credit, they also reviewed the studies and indicated it would be difficult to draw strong conclusions given their small sample sizes. I was counseled that persistent effects were very unlikely and referred to a urologist.

With the urologist, I again noted loss of libido, genital sensitivity decrease, and ED. I also noted the penile pain which had developed since my referral. I then inquired as to whether this specific cluster of symptoms was strongly associated with any known condition. After receiving a negative response, I suggested an association with finasteride. The urologist was clearly aware of PFS, providing opinions of 2 other doctors commonly mentioned on this forum when I volunteered their names. They also noted that they advise patients with symptoms like mine to discontinue finasteride if they are taking it.

In response to my inputs, a basic genital exam was performed, again finding no issues. Urinalysis with culture was also ordered, also finding no issues.

Despite my repeated suggestion, the urologist stopped short of attributing any of my symptoms to finasteride, indicating that causality would be difficult to establish and noting that there is no specific treatment for PFS in any case. They would not entertain referral to an endocrinologist, given that my total testosterone was within range when tested. Finally, they expressed a low opinion of independently supplementing DHT, citing lack of evidence for its effectiveness.

For loss of libido, the urologist provided a prescription for flibanserin, noting that use in men was off label. For genital sensitivity decrease, the urologist indicated that, although they could refer to a neurologist for confirmation via QST, no established treatments are available. For ED, we agreed that I would retain my GP’s sildenafil prescription. For penile pain, the urologist indicated that pelvic pain is especially difficult to diagnose and requested that I monitor my intake of various urinary irritants with the goal of identifying a trigger. Finally, when I mentioned offhand that I was suspicious of my flaccid penis size, the urologist responded that reduction is known to occur transiently as part of the sympathetic nervous system’s response to stress.

Overall, although I am somewhat disappointed by the urologist’s avoidance of a PFS diagnosis, I generally concur with their guidance on treatment.

1 Like
#10

Self-reporting template

  1. Name of the therapy/substance: Bupropion SR
  • Dosage: 100 mg
  • How often you took it: Twice daily
  1. Status
  • Still using [ ]
  • Stopped with no lasting change to initial symptoms [X]
  • Stopped with persistent change to symptoms [ ]
  1. Duration of use: Days [ ] Months [3] Years [ ]
  2. Response when you started:
  • Greatly improved [X]
  • Slightly improved [ ]
  • Stayed the same [ ]
  • Slightly worsened [ ]
  • Greatly worsened [ ]
  1. Current response
  • Greatly improved [ ]
  • Slightly improved [ ]
  • Stayed the same [X]
  • Slightly worsened [ ]
  • Greatly worsened [ ]

This is an update to my initial self-report on bupropion.

Although my initial response to this drug was encouraging, its effect appeared to diminish over time, to the point that I no longer felt incentivized to take it and ultimately discontinued. I believe others on this forum have made similar observations.

My psychiatrist suggested that regular cycling (specifically by discontinuing on weekends) might restore some efficacy. I did not attempt this as I had already observed that irregular cycling (missing days due to simple forgetfulness) did not affect my response, and because I was concerned about possible adverse effects of repeated discontinuation.

#11

Hi, I think you sent me a message on maybe another profile I had on here. I am still writing the book, albeit a great deal more slowly than before COVID. I spoke to my agent last week and am currently updating information and perhaps a bit of the approach with the book. I switched careers during COVID, which has significantly impacted the book until recently.

1 Like
The Lost Men- PFS Book
#12

Hi Mary,

Yes, I had messaged you to request an update on this old thread:

Thanks for the update! Glad to hear you are still working on the book. It might help to post this information in the old thread, for others who are also interested.

#13

I don’t have access to this old account. Is there a way for you to post it there? My apologies.