Only 3mg of Finasteride - my experience, 5 weeks off

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)?
UK

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?
23, 5’8, 64kg

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.)?
0.25mg

What condition was being treated with the drug?
hair loss

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

Date when you started the drug?
5/09/22

Date when you quit the drug?
17/09/22

Age when you quit?
23

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 days

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

Mental
[X] Emotional Blunting / Emotionally Flat
[X] Difficulty Focusing / Concentrating
[X] Confusion
[X] 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
[X] Suicidal Thoughts

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

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

[X] Other (please explain)
Sensitive skin
Minor neuropathy/nerve pain in hands
Muscle fasciculations

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.

Hey all, new member here. I used finasteride for 12 days in early September to treat hair loss. I had a couple of minor symptoms on it (brain fog, ball ache, some loss of libido) which came and went, but eventually decided to quit when I did some further research into sides.

A week after I quit I had my first crash. This essentially consisted of a 24hr panic attack during which I was unable to sleep. Luckily this insomnia only lasted a day, however the following week was filled with waves of anxiety which would come and go at random.

The next 2/3 weeks was okay… I started to notice some digestive issues and general fatigue but at least the anxiety/insomnia was gone for the most part, and in this regard I thought I was recovering.

However, at around the 24 day post fin mark, I had another MASSIVE crash - anxiety, insomnia, suicidal, anhedonia, shrivelled dick, incontinence, total loss of appetite, weight loss, muscle wastage etc. For about a week I slept only 1-2 hours per nights and was pretty much in a constant state of anxiety.

At the time of writing I am 5 weeks post fin and just about recovering from the mental sides of the last crash. I have managed to sleep well for 4 nights (no idea how long this is gonna last) and the brain fog is somewhat gone for now. My sexual sides have also mostly resolved for now (have managed to have intercourse a few times, no chance that was happening a week ago…)

However, my physical sides have pretty much continued to worsen. My appetite is back but I am still experiencing muscle loss, joint pain, fatigue, slight gyno and some nerve issues which I suspect is minor neuropathy (burning sensation in hands and arms).

Bloods wise:
My TSH and T3 are normal, however my T4 has gone from 12.6 before fin to 20.8 pmol/l (range 12-22). Indicates possible hyperthyroidism.

Testosterone: 9.6 nmol/L (Range: 7.6 - 31.4)
Free testosterone: 0.135 nmol/L (Range: 0.2 - 0.62)
Prolactin: 70 mIU/L (Range: 86 - 324)
SHBG: 51 nmol/L (Range: 16 - 55)

So looks like my test is very low and SHBG fairly high (though not technically out of range)

I have an appointment with an Endo on Tuesday (not that I think it’s gonna help) to go through my bloods and maybe get some other ones (eg DHT) done. I’ve had a number of people tell me this is all just caused by depression and I should jump on some SSRI’s - if only they knew :upside_down_face:. Think my best course of action is to wait and see what happens… I will try and update this weekly in the meantime.

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#2

Hey @infinite,

I’m sorry to hear that you’ve been going through this awful experience. All of the symptoms you’ve described are commonly mentioned here.

I unfortunately don’t have any first-line treatment suggestions to offer you because we don’t know exactly what’s going on (yet) and there is nothing that truly has a reliable track record of being effective.

That said, I want to advise you to try not to obsess over the numbers too much or have high expectations when visiting specialists such as endocrinologists. While it will not hurt to check your hormone levels via a blood test and see if there is anything you might be able to improve, we currently have no reason to believe that there are any notable or consistent overlap among PFS-patients’ blood-hormone panels. Despite the plethora of symptoms, your hormone panel may return pretty much normal, as it does for most people.

Additionally, the issue is still often disputed by medical professionals and you may be confronted with skepticism and be told that these symptoms are likely psychosomatic in nature, which I can assure you they are not. While I wouldn’t advise anyone to delve into a back-and-forth with their doctor(s) about this, I’m just mentioning it to prepare you for possible disappointments.

In any case, take good care of yourself to the best of your ability, and as I’ve said before I hope things will improve naturally for you in the coming months. We often see people report here and then recover in their first half year or so. So try to give it some time.

Welcome to the forum.

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#3

Hello @infinite welcome to the forum. Sound advice from wintermoon Time is very important given where u are (very early on) you have every opportunity to recover. One thing I would add is that you report your symptoms to the MHRA via the yellow card scheme underreporting is what keeps this fucking shit on the market. It only takes 5 minutes.

Thanks

3 Likes
#4

Thanks for the welcome guys, and yeah I’ll deffo report it Laz.

2 Likes
#5

UPDATE - 6 weeks post fin.

My Endo confirmed I have PFS and told me to wait 3 months.
My symptoms have kind of fluctuated a bit.
Better - brain fog, anxiety, sleep, burning sensation in hands, body temp, fatigue (maybe)
Worse - muscle loss, skin sensitivity, depression, most sexual sides

This is the week that things finally sank in. Might be because my head has cleared a bit.
I’ve gone from hope, to despair, and back more times than I can count. The thoughts of PFS are virtually all consuming. I find myself zoning out of conversations etc, this is something I definitely need to work on. I think a significant amount of my anhedonia, depression and lack of motivation is actually due to this - i.e if I didn’t know what PFS was I would likely feel somewhat better mentally. Still, it pains me to see pictures of myself only 2 months ago and to imagine what I would be doing now if fin didn’t exist.

Sorry for the venting guys, I know you’ve all been here before. You are amongst the bravest and most resilient people I’ve ever come across, and I hope that I can emulate that mental fortitude in the coming weeks/months.

5 Likes
#6

So turns out that during the 2 weeks leading up to my big crash, I had been taking a multivitamin with 400x the recommended vitamin B12 dose. And using ketoconazole shampoo. Yep, a methyl donor known for worsening PFS and a 5ARI. Just my luck :confused:

#7

I hope you’re okay, I’m here for anything.

1 Like
#8

How u feel today?

#9

Mentally I think I have plateaued. Managed to start working again this week (although my cognitive abilities seem to have declined somewhat compared to pre PFS, especially train of thought/conversations). I will be starting a diet and/or attempting a water fast at some point.

Physically it’s harder to say. Certain symptoms come and go (for instance I dont have the nerve pain I had a few weeks ago, or cold sweats). But the main one (muscle loss/body composition change) has continued. I don’t expect this to stop anytime soon unless my muscles miraculously regain their androgen sensitivity.

How are you doing Henrique?

#10

It’s been 2 months and 2 weeks since I had the crash. I’m on my sixth dose of TRT. My muscle pain has stabilized, my weakness has improved a lot, but it comes and goes too. For a few days now, I have noticed less genital sensitivity, less libido and cognitive problems with reading, difficulty maintaining focus in a conversation. My muscles are still limp. I’m not working, but I plan to go back to work next year. My mother has helped me a lot. Day 11 now I have a doctor and let’s see what direction we will take. Note: I cannot guarantee if the stabilization of my muscle loss was natural or if it was due to testosterone. I’ve had a few mini-crashes, waking up suddenly with a feeling of shock through my body and a racing heart.

#11

UPDATE - 9 weeks post fin.

Saw a nutritionist. While I agreed that reducing gut inflammation would help, I also had to spend 10 minutes trying to explain why high dose B vitamin supplements would make me worse. It is quite infuriating trying to explain PFS to someone who is convinced it is nothing more than low T and an imbalanced gut. Anyhow, I’m now trying a Paleo diet.

Positives:

  • Dry skin has improved
  • Muscle loss has slowed/weight stabilised
  • Can respond to alcohol
  • Higher libido
  • World Cup starts today

Not so positive:

  • Transient pain/burning in muscles
  • Pain in balls, also sometimes when urinating
  • Collagen loss
  • Still tired most of the time

Although my neurological symptoms have plateaued, this is still a pretty awful baseline, and these are surely the worst of my sides. Low stress tolerance, difficulty concentrating, lack of motivation, partial anhedonia and so on. My brain function is currently a crude simulacrum of its former self - I honestly feel like I have lost 30 IQ points. Luckily I am still able to enjoy music, movies and watching sports - I really hope this remains.

Social interaction is much more difficult, and requires substantial effort. In a former life I was very confident, extroverted and always up for a debate. Nowadays I hardly contribute to conversations, and have much less to say about topics and interests I once held dearly. This makes socialising a double edged sword - while it can improve my mood, it also has the simultaneous effect of reminding me of how much worse I now am at it! Despite this all being caused by a lack of neurosteroids, I am hopeful that my brain will be able to partially adapt with increased exposure to situations I find uncomfortable. Interestingly, when drinking alcohol the other day I felt the closest to normal since the crash (GABA and all that).

I am lucky to have a loving GF who is very understanding. That being said, I am unsure how long that can last given my current predicament and likely non recovery, although perhaps I am being overly pessimistic.

In summary, this condition is absolutely horrible. I really hope Donald Trump gets it (actually on second thought, I don’t even think he deserves this!). I’ll post another update when I hit the 3 month mark.

2 Likes
#12

3 Month Anniversary - Official PFS Diagnosis

Symptom list: 1 (minor) - 10 (full blown)
Sexual
[X] Loss of Libido / Sex Drive: 2-4/10 depending on day - higher when with my GF
[X] Erectile Dysfunction: 4/10 - fluctuates but generally ok
[ ] Complete Impotence
[ ] Loss of Morning Erections (Somewhat recovered)
[X] Loss of Spontaneous Erections: 4/10 - less frequent but still happen
[ ] Loss of Nocturnal Erections (Somewhat recovered)
[X] Watery Ejaculate: 5/10
[X] Reduced Ejaculate: 5/10
[ ] Inability or Difficulty to Ejaculate / Orgasm (Recovered)
[ ] Reduced Sperm Count / Motility

Mental
[X] Emotional Blunting / Emotionally Flat: 5/10
[X] Anhedonia 5/10
[X] Difficulty Focusing / Concentrating: 4/10 - zone out of conversations quite a lot
[ ] Confusion (Recovered)
[ ] Memory Loss / Forgetfulness (Recovered)
[X] Stumbling over Words / Losing Train of Thought: 5/10. One of my most annoying sides. Previously when making points during conversation my thought process was very clear and flowed naturally. Now it is far more discontinuous and each step requires more processing. It feels like my brain is constantly trying to catch up. There’s no good way of explaining this, but I’m sure you guys know what I’m talking about!
[X] Lack of Motivation / Feeling Passive / Complacency: 7/10
[X] Indecisiveness: 7/10 - My normally executive inner voice appears to be absent.
[X] Extreme Anxiety / Panic Attacks: 4/10 - Better but still have zero stress tolerance
[X] Severe Depression / Melancholy/Suicidal Thoughts: 5-10/10. Fluctuates, better in evening for some reason.
[X] Cognitive impairment: 4/10 - Mental multiplication, abstract and logical reasoning, conceptualisation etc are all harder. Thank god I got university out of the way before this shit hit.

Physical
[X] Penile Tissue Changes (narrowing, shrinkage, wrinkled): 4/10 - but normal when erect
[ ] Penis curvature / rotation on axis
[ ] Testicular Pain (Recovered)
[X] Testicular Shrinkage / Loss of Fullness: 3/10 - possible slight reduction.
[ ] Genital numbness / sensitivity decrease
[X] Weight Gain: 3/10 - not a gain per se, rather the well reported change in fat distribution.
[X] Gynecomastia (male breasts): 3/10 - slight pseudo gyno
[X] Muscle Wastage: 5/10 - slowed but still continuing
[X] Muscle Weakness: 6/10
[ ] Joint Pain (Recovered)
[X] Dry / Dark Circles under eyes: 5/10

Misc
[ ] Prostate pain
[X] Persistent Fatigue / Exhaustion: 4/10 - better, still tire easily during exercise
[ ] 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

[X] Other (please explain)
Sensitive skin - this fluctuates
Minor neuropathy/nerve pain in hands - better but still there sometimes
Stretchier skin/collagen loss

What an awful 3 months. 0/10 would not recommend

To be perfectly honest, I am still in disbelief that this has happened. It really is like something out of the Twilight Zone. I am incandescent that this poison is being handed out like candy, despite significant evidence of its deleterious effects. Each new member story I see breaks my heart.

If you’re a new member reading this and haven’t already done so, please report your sides to the relevant authorities. Make your doctors aware of PFS and show them the latest research. Write to a local newspaper or your MP. These will all make a tangible difference.

I truly believe that with further research and publicity this drug will eventually be taken off the market, and the world will recognise the injustice that has befallen us. And hopefully, we will have some treatment by then.

Infinite x

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#13

Thought I’d post a 6 month PFS update. For context, I crashed very hard and at one point had over 40 symptoms (scroll up if you want to read more).

The positives

  • My cognitive symptoms have pretty much resolved. Short term memory, abstract thinking and reasoning is back to normal. Anxiety and insomnia are gone. Verbal acuity is not quite normal but has vastly improved. I have been able to resume my job after a few months off and have had no problems there.
  • Anhedonia and emotional blunting have greatly improved. Emotions aren’t quite as vivid as before but my interest in hobbies, work and socialising is much better. Music, TV and reading have become engaging again. General mood has gotten better and I am no longer depressed 24/7.
  • Sexual symptoms have greatly improved in the last 3 months. Won’t go into detail but I can have sex normally without medication.
  • Been back in the gym + climbing after 5 months off and strength is improving. Exercise intolerance is mostly gone although my cardio stamina is still shit. Too early to say whether I’ll be able to fully build back the muscle mass (2kg) that I lost during my crash. Ability to sweat has returned.

What has precipitated improvements:

  • Time
  • Consistent exercise
  • Socialising with friends and family
  • Trying to forgive myself for taking fin. This is particularly applicable to me since I was barely losing hair. Unfortunately I was led to believe it was an extremely safe drug.

Negatives

  • Skin is still stretchier in certain places (mostly on arms)
  • Muscles still feel softer and less dense than before fin. Hasn’t really changed since the crash.
  • Slight weight gain around stomach and thighs. I should say that all the above are apparently imperceptible to others (including my GF) but I know my body very well and they are most definitely real lol.
  • Intermittent nerve pains in hands and feet. Not as intense as when I crashed but still present. Doesn’t really hurt, just a bit uncomfortable. Tryna figure out what triggers it (ie alcohol or certain foods?)

Despite my improvements, I am highly cognisant of the variable nature of this disease and I am taking nothing for granted. It is entirely possible that I could lose all my progress tomorrow. It is imperative that we continue to fundraise and aid efforts to publicise this condition, as well as contact our respective medical authorities on a regular basis.

5 Likes
#14

Hey man, how are you doing today?

#15

Thought I’d post an update on the year anniversary of my first pill (of three). Been quite the rollercoaster to say the least.

The positives

  • Neurological symptoms are virtually gone (can enjoy hobbies, going out etc). This is not to say that I don’t have melancholy moments, but more so that these are situationally driven rather than neurologically (a far cry from the intense anhedonia of my first months post-crash)

  • Normal libido and 90% sexual function

  • Been able to build back all lost muscle in the gym

  • Fatigue has improved considerably

The negatives
Still have most of the physical issues I reported 6 months ago (not really negatives I suppose since nothing has gotten worse):

  • Soft muscles (probably the strongest/biggest I have ever been but the muscles themselves lack density!). I know @Recovery18 has spoken about this before

  • Skin stretchiness - doesn’t really impact me it’s just weird!

  • Still get intermittent nerve pains

  • Dry skin/scalp. As pathetic as it sounds this is probably my most annoying symptom (I apologise in advance as I know this is a very minor symptom compared to many others) - I basically have a very dry/itchy scalp (which produces no oil) leading to quite a lot of flaking. Really vexing, and very much considering shaving my head so I can moisturise my scalp properly (ironic, right)

I continue to donate on a monthly basis and encourage others to do so if they are financially able.
I don’t really visit the forum these days but I will try and post a yearly update - till then, take care all!

1 Like
#16

Congratulations, it sounds like you’ve almost recovered. At least for me, it’s equivalent to returning to 100%. I hope I can reach your position in a shorter time.

#17

So unfortunately after being in a pretty good state for a number of months, I used my flatmates shampoo which happened to contain coal tar. This is apparently anti-androgenic.

Since then I’ve had a return of a number of neurological symptoms including brain fog, insomnia and anxiety. It’s been 4 months now and virtually no change. Still hoping for some alleviation of these within the next year, as it’s pretty hard for me to work some days.

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