Just passed 3 months off Fin, 26yo from UK, in desperate need of advice

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)?
England

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 search, post finasteride syndrome

What is your current age, height, weight?
26 years old, 6’1, 82kg
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.)?
Various dose titrations 1mg, 1mg every other day, 0.5mg eod, 0.25mg daily

What condition was being treated with the drug?
Androgenic alopecia

For how long did you take the drug (weeks/months/years)?
5 months with 1 3 week break after 3 months

How old were you, and WHEN (date) did you start the drug?
25yo, started on 16th April 2021

How old were you when you quit, and WHEN (date) did you quit?
26yo, stopped on 22nd September 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?
at first only breast tenderness, noticed within first 2 weeks. Most side effects only started post crash upon discontinuation.

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
[ ] 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
[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
[x] Penile Tissue Changes (narrowing, shrinkage, wrinkled)
[x] Penis curvature / rotation on axis
[ ] Testicular Pain
[x] Testicular Shrinkage / Loss of Fullness
[x] Genital numbness / sensitivity decrease
[ ] Weight Gain
[x] Gynecomastia (male breasts)
[x] Muscle Wastage
[ ] Muscle Weakness
[x] 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
[x] Tinnitus (ringing or high pitched sound in ears)
[ ] Hearing loss
[ ] Increased hair loss
[x] Frequent urination
[x] Lowered body temperature

[x] Other (please explain)

Insomnia, waking up after 2-3 hours every single night, can only achieve zomby sleep for the rest of the night

Premature ejacultion despite very little sensitivity and numbness

Possible fibrosis or hard flaccid syndrome, need confirmation from urologist

Complete loss of Sebum production, dry skin, ear wax production, mucus production (no bogies) and dry mouth (particularly at night)

dental problems, receded gums, tartar build up, sensitive teeth

Thinning body hair and lightened body hair. particularly noticable in beard

Cold genitals

What (if any) treatments have you undertaken to recover from your side effects since discontinuation of the drug?
Short term promathazine and zopiclone for sleep. neither helped much.
Cialis 5mg

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)?

Pre and 7 days off blood tests reveal lowered total and free testosterone, raised oestrogen, lowered LH and FSH (in bottom end of range) have not done further tests yet.

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.

Hello everyone, after lurking on this forum an awful lot I decided it was time to make myself heard as I am coming to the realistaion that I am likely in this for the long haul. after nearly 4 months since I stopped Finasteride, my condition has only progressively worsened.

I believe I am a severe case of PFS, I seem to have developed nearly every symptom I read about on here, new symptoms keep developing and nothing has improved at all. I have gradually descended in to a completely non functional human, to the point where every minor task is a struggle.

The first most severe symptom I experienced since I crashed is the Insomnia. I can only manage 1-3 hours every single night for 4 months, no matter what I do. for the rest of the night I can only get that extremely light zomby sleep which sometimes include very vivid dreams. I’ve been on 10 mile hikes, Heavy gym workouts, I can be absolutey exhausted to my bones, but will still wake up after 2-3 hours every single night. I have integrated sleep hygiene measures as well, but I believe severe sleep disorder is completely behind anything sleep hygeine can solve. I’ve tried promethazine and Zopiclione. Promethazine didn’t work at all, and zopiclone only gives me an extra hour or 2 and I feel physically more exhausted and depressed the next day. I use magnesium glycinate, I’ve tried valerian root, L-theanine and chamomile tea. All have had very little effect. L-theanine does work to soothe my anxiety somewhat though.

I think the thing that is preventing any recovery for me is by far the mental/neurolgical effects. Complete anhedonia, absolutely zero enjoyment from anyhting I used to enjoy, I feel like I’m losing my personality. I am in a constant state of anxiety, mainly from the sheer terror that all this could be permanent. I have zero drive/motivation to do anything at all, even for leaving my bed to take a piss. on a good day I can force myself to go for a walk, light workout at home or in the gym, go to the shop and cook myslef some food. However I feel zero reward from any of this and on the worst days I will struggle to get out of bed at all. I know anti depressants are dangerous, but there must be something safe I can use that will help me to get to a place where I can form helathier habits.

I have all the sexual symptoms. zero libido, veiny fibrotic penis, shrinkage, even reduced pubic hair growth. I am not completely impotent, but erections are much harder to achieve, are weaker and I have prematue ejaculation during sex (never had this problem in my entire life). reduced, watery ejaculate, reduced orgasm and bad numbness. I am lucky to have a supportive girlfriend, although as long as I am in this mess, I’m not sure how much more of all of my hopeless despair she she can endure.

for the first 3 months I followed the advice of wait it out, I didn’t want to intervene medically and was hoping for some natural improvement, however everything has progressively gotten worse. I need some sort of intervention, at least for the sleep and this debilitaing, despairing depression. It seams like for every post I read on here of something helping, there is someone else who got worse from it. There is such an abundance of information on here that I found myslef totally overwhelmed every time I search for treatment options. I am just really struggling to decipher what is a good idea and what is not.

After 4 months, should I still wait for natural improvement? Is implementing protocols like CDnuts a bad idea? Should I be pursuing HRT, TRT? I just don’t know where to start. I feel like I don’t have the strength to implement all these diet changes, prepare all the food, stick to the workouts. I have been a passionate gym goer for years, heavy barbell lifts, full body workouts 3x times per week and consistent. Now I am only getting weaker after every workout, I can’t recover from heavy lifting anymore and have lost so much muscle.

I am truly amazed at the strength of some of the members here who can keep going despite this debilating disease and continue the fight.

Please someone help me, I need to work out what things are safe for sleep and depression as a prority. At least if I can improve these somewhat it might become easier to tackle the other things.

I’m afraid I don’t have much to offer here in terms of theories or ideas, just a desperate young man asking for advice.

6 Likes
#2

What brings me down is that the internet is full of warnings about the permanent side effects of Finasteride. I took this biological weapon from 15 Feb to 6 April 2021.
A doctor gave it to me just to try. For a year I had it in my sideboard. There was now medical need to take it for my enlarged prostate. Just a try.
Over this year I never checked the internet. In the year 2021 so many newspaper articles and tv reporters deal with the dangerous poison that it was more difficult to find nothing than to find anything about PFS and the permanent effects. The leaflet is a criminal gaslighting, because they don’t write about the permanent or long time persistent side effects. But even the slight leaflet would motivate to check how long it can persist after quitting mean.
This is what brings me down. Why we didn’t inform ourselves before taking this ugly poison. I’m in a never ending endless circle about I play the game that I checked the internet and put the killer drug into the toilet or out of the window in my car, or cry at the urologist as loud as I can.

With the time all the sides will improve. If you was in a good mood and had support from your girlfriend you’ll feel much better soon.

2 Likes
#4

Of course. Everything will be good. You will feel much better yourself!!! Stay strong mate!!! Stay strong… As strong as you never can imagine… Everything will be okay when you will accept this all. No more girls, no more joyness, no more love, no more motivation, no more life. When you accept this all will everything be okay. Be greatful you live. Lot of people much worser than us. Lot of people completly no arms, legs and dick. Some has no body. Just the head. So be greatful. Everything will be all right. You can go to the toilet its a good thing. Imagine it if you cant go to take a shit or a pee . Be greatful to god. He will save us. Just be strong!!! You are not alone!!

#6

Hey some posts withdrawn by the author. I only write that to your post, because I see so many young guys on tressless and hairloss forums who use finasteride. Every day many guys start their finasteride oral or topical course and I m so shocked that it never stops.

And every week another young man sufferers the permanent side effects and it never stops.

And not all of them tell about their suffering here on Propecia Help. I think many other young guys live with ED problems, lower libido and other problems with out talking about this. But they have to, to show the real dimension of Finasteride problems.

Stories like yours make me so agressiv against the hairloss industry and the false information in all the hairloss forums.
Every critical comment is there commented as it’s all in your head, PFS doesn’t exist, there is no peer reviewed article, it’s so super rare and you need a psychiatrist.

The tips for a better sleep and against depression is if you live this out over the day and try to get with a “good” feeling to sleep, because all thoughts will stop at night.

1 Like
#7

Every day I live in regret because I was actually aware of pfs before starting!! I had heard of the side effects, I had even heard of this forum! However in my obsession with saving my hair I was far too easily influenced by yes tressless, hair loss forums and a couple of youtube channels in particular, kevin mann and those australian doctors from the hair loss show. I was actually convinced that everyone here are merely hypochondriacs, and that if I got side effects, they would more than likely go away.

How ignorant and Stupid that was, I live in regret every day for ignoring all the warnings, I rolled the dice and it’s potentially cost me my whole life.

1 Like
#8

Stay strong dude… Will be better. Just accept this.Its our lifes now. But stay strong. Write PM. There are a lot of guys here. Imagine if you will be in wheelchair with this shit. Or if you will blind with this all. Always possible being worser… Be greatful you have eyes and you can walk. Donate to the research. They will find the cure. Just speak every day to god. Read the bible. Be strong and keep going. I know you are strong. Be greatful you still live.

1 Like
#9

Hi @Finarb - and welcome to the forum. You seem to have been hit with the kitchen sink… I’m sorry you’re in this situation.

4 months is still a relatively short time. Way to early to risk worsening your condition with supplements or hormones. Personally I had gradual, “natural” improvements up to 24 months out.

Exercise intolerance and sleep problems is a bad combo that makes it hard to implement healthy lifestyle changes. That leaves diet and stress. If there’s any way you can reduce stress in your life, I’d do that, even if means forgoing a promotion or taking fewer credits at school. I tend to recommend meditation because it is side effect free and helpful in all kinds of ways. (Takes a few weeks to work though.) The situation with your girlfriend is tough – you don’t want to constantly think about her leaving you, while at the same time, you should be honest about what’s going on with you.

Diet is also tough, and might require some trial and error – some people find themselves really sensitive to foods that have an impact on hormones or are mild 5AR inhibitors (green tea, avocados, soy, and many others). Others see no difference with those types of foods. In any case, avoiding processed foods, fast food, simple carbohydrates, soda, smoking, etc, is a baseline for starting to feel a little better.

Please use this thread to keep everyone posted about how you’re doing, even if there’s no change.

Here are a few other things you can do:

2 Likes
#10

“How ignorant and Stupid that was, I live in regret every day for ignoring all the warnings, I rolled the dice and it’s potentially cost me my whole life.”

So we are not alone.

I ignored even to look for anything, even to make a three minutes internet check about Finasteride.
And it’s very cynical that you know about it all and took it.
So we both in the endless circle dreaming of the time machine to set us back to the day we got these perverted fin from a perverted doctor an bang him a kick instead of taking the ugly poison.

It’s heavy to be one of the 0,1% who is predisposed for PFS.

1 Like
#11

Thank you @M_C for the supportive response. It does feel slightly comforting to know I am not alone.
I am currently taking only vitamin D, a fish oil supplement and magnesium glycinate for sleep. Do you think I should stop?
I don’t understand how people are so in touch with their bodies that they can know what they are reacting to. I have gradually gotten worse but I can’t tell if the supplements are influencing that or certain foods I’m eating.

I am definitely having a reaction to a lot of meals where I feel the need to lie down and my energy crashes so low it feels like I am feinting rather than falling asleep. How am I supposed to figure out what particular things are causing that?

#12

Unfortunately this is a common theme. I fell victim to the same trap. Those Aussie docs and Kevin Mann had me convinced and I hope they get what they deserve one day. I even took fin a 2nd time because I assumed it was safe, then I got hit with severe PFS. I have heard many people improve with time. This has not been the case with me but I have spoken with others who have. I think in the beginning you just need to give it time and not experiment with too many treatments out of desperation. I wasted a bunch of money on tests, dr appts and supplements that did nothing or possibly made me worse. Wish I had just used that money towards research. The most important thing right now is getting this new project going so we can find targeted treatments. Any donations you and your loved ones can make will help. That has been my mission of late. I wish you nothing but the best and hope you can find some relief from your symptoms.

3 Likes
#13

I take magnesium citrate for sleep and digestion… I don’t have any issues with it. I had low but D levels before, but restored them with supplementation (although I’ve seen some ppl have negative effects from larger doses). I also happen to take fish oil. No problems with that either.

I also used to get very brainfogged after every meal. An awful feeling. I don’t want to give “drive by advice”, but I think water fasting helped a lot with this. You might also want to experiment with some “reset” diets like the Chris Kresser one or whole30.

#14

“0.1%” I’m positive it’s MUCH higher.

Most only have ED and low libido though and many think it’s because of aging.

2 Likes
#15

Yes I think the old men over 65 think it’s the age and not finasteride. Here are only a handful victims who got Finasteride against benign prostatic hyperplasia. Most of us much to early in the fifties, without any medical need.

1 Like
#16

I think most victims who got PFS were young men by a LARGE margin.

Most on here took finasteride for hairloss in their twenties or early thirties.

3 Likes
#17

Yes that’s absolutely true. The user structure here is between 17 and the forties. And the traffic on PFS foundation Website with 500.000 frequent users speaks for more than a few thousand victims. So the majority of the victims live with the lifelong persisting issues and never talk about this. Why they don’t register here to get the fight against the almighty pharma war machine more power.

1 Like
#18

Did you have insomnia? I work as a climbing arborist, very labour intensive job, also very dangerous. I simply can’t do the job on 2 hours sleep a night. My employers have been great so far in giving me time off, but now I am going back 2 days per week with an expectation to increase over time. If I don’t get some more sleep I’m afraid I will lose this job. There must be some supplements for sleep that are safe.

#19

I used to find a handful of cherries, a slice of turkey or half a head of lettuce before bed used to put me out. It helped me for a longtime before I discovered I had pfs

#20

I have bad insomnia. After I crashed, the only thing that allowed me to sleep at all were benzos but now I’m here a year later and taking a benzo 3 times a day which has probably made matters worse. I don’t feel anything from the benzos anymore. I tried a bunch of different supplements. Valerian root, melatonin, glycine, magnesiums, chamomile tea, nothing worked. I now sleep 4-6 hours of shitty sleep every night, waking up multiple times throughout. I know some people’s sleep has improved with time. I cant recommend anything from my experience other than dont get hooked on Benzos as that becomes a problem in it’s own right. Maybe have them to use like once a week when you are desperate for a better nights sleep and you won’t build tolerance that way but it will be hard to resist using them if they work.

#21

How do you manage your job as climbing arborist with this disease? It’s a wounder for me. Do you have the mental power to force yourself to climb up the tree and still the muscle strength for doing this bone hard job?

#22

@Exsexgod my employer was decent enough to give me 3 months off work, because there is no way I could have carried on in that state. From last week I have gone back 2 days a week part time. On Wednesday I pollarded (full tree pruning practice) a not very big lime tree and it was extremely difficult. What used to be an absolute breeze for me. It was like a machine running on empty, just no power in my muscles and very off balance, out of breath very easily. Also off the back of zero hours of sleep the night before. I am very worried I will lose my job because pfs is destroying my physical and mental ability. I used to climb trees all day and still lift heavy weights in the gym 3 times per week. Without this job I am nothing. No higher level education, the only skills I have are tree climbing which it seems I am no longer capable of doing safely and efficiently. I am forcing myself in to work 2 days a week because if I don’t I will lose this job and subsequently my flat, and have to move back in with one of my parents away from girlfriend. The downward spiral continues and if I am not careful it will end with me single and unemployed living with my parents at 26 years old.