Journal of a Wildman

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 search for “Finasteride and Acne” eventually led here

What is your current age, height, weight? 64 y/o, 6’4", 305 lbs.

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

What dose did you take (eg. 1 mg/day, 1 mg every other day etc.)? Dosage was 5mg/day

What condition was being treated with the drug? BPH

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

How old were you, and WHEN (date) did you start the drug? 63 in April 2019

How old were you when you quit, and WHEN (date) did you quit? 63 in June 2019

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

How long into your usage did you notice the onset of side effects? Within a week my libido was fading and ED was beginning

What side effects did you experience that have yet to resolve since discontinuation? ED, sexual and social anhedonia, joint pain, muscle weakness, weight gain, severe acne, confusion, uncoordination, brain fog, depression with suicidal ideation, constant headaches.

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
[ x] Complete Impotence
[ x] Loss of Morning Erections
[ x] Loss of Spontaneous Erections
[ x] Loss of Nocturnal Erections
[ ] Watery Ejaculate
[ ] 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
[ x] Slurring of Speech
[ xLack 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
[ x] Weight Gain
[x ] Gynecomastia (male breasts)
[ ] Muscle Wastage
[ x] Muscle Weakness
[ x] Joint Pain
[ ] Dry / Dark Circles under eyes

Misc
[ x] Prostate pain
[ x] Persistent Fatigue / Exhaustion
[ ] Stomach Pains / Digestion Problems
[x ] 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
[ ] Lowered body temperature

[ x] Other (please explain)I have had severe acne, first on my face and now my chest and scalp.

What (if any) treatments have you undertaken to recover from your side effects since discontinuation of the drug? None, after reading all the conflicting stories here, I have tried to "ride it out."

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)? I only have testosterone numbers, which stayed steady in the 600’s before, during and after the onset of PFS due to TRT I believe, until recently when my script ran out and test dropped to 25.

Anything not listed in the above questions you’d like to share about your experience? As you will read in my story, I have hypogonadism treated by Androgel TRT. Contrary to the opinions of some members here, I fully believe that I have PFS and that maybe my TRT kept it from hitting me as hard as it may have otherwise done. More in my story…

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

This is my story, I am different from the majority here in three ways:

First, I am 64 years old. I am one of those insignificant “old men”, according to some of the youngsters here.

Second, I was on Proscar for BPH, and at 5 mg daily my dosage was five times what most Propecia dosages are.

Third, I have been on AndroGel TRT long before, during, and after my finasteride usage and the onset of my PFS.

My story, from the beginning:

I do not drink alcohol and have not had any in 30 years. Also I do not partake in any recreational drugs, even weed. I have taken supplements in the past when working out, but not in the last several years. I maintain clean living and watch my weight. I mention all this to set the stage:

I was hypersexual throughout my adult life. Even going into my sixties, I was good for two times a day.

Four years ago things started slowing down, and I was diagnosed with hypogonadism. My urologist prescribed AndroGel testosterone, and life was back to normal for me.

Last spring he prescribed Proscar for BPH. I started taking a 5mg daily dose on April 1st (how appropriate,) and within a week my libido and erections were disappearing. Since the middle of April 2019, I have not had an erection, and thoughts of a sexual nature have also ceased (anhedonia.)

Two months into Proscar and I had depression. Was this caused by lack of sex, or by the Proscar itself? Who can tell? Also, in 6 weeks I had gained over 30 lbs with no change in diet or exercise activity. Since then I have gained another 10 lbs despite my best attempts at losing weight. It can be hard to diet when you are depressed.

By the third month I was having acne attacks on my face that was unlike anything I’d had in 40 years. I Googled the phrase “acne and finasteride”. The sixth article on the list that came up was a story “How finasteride destroyed my skin”, written by a young man Matthew Johnson. I later found out he had committed suicide due to finasteride, and his story is in the memoriam section of this website.

My acne was mainly on my left face side, deep pustules that bled heavily when drained. Although TRT can cause acne, it never did with me. This was a new development. Sometimes a few would erupt in my scalp, chest, or my right cheek. Also, my hair would feel greasy within hours of a shampooing.

The Johnson article led me to propeciahelp, which then led me to this forum. Reading through the forum, I recognized so many things that had happened to me: the ED, lack of libido, joint aches and pains and accompanying inability to sleep, weight gain, and of course the ever-present depression.

I called my urologist the next day and told him I was going off of Proscar immediately. My last day taking the drug was June 30th, exactly a three-month period. I had an office visit with him shortly thereafter and discussed PFS with him. He seemed sympathetic, but unfortunately for me he was closing up his practice and moving to California. He extended my AndroGel prescription by 6 months and suggested I find another urologist.

The third week of July I had what I think was my first crash. Over the space of two days I had a terrible rash on my chest, neck and face, and the neck and face regions got so swollen I went to emergency care. They could find no reason for it and gave me a steroid shot and a week’s worth of steroid pills.

That was when I first experienced brain fog. Also I seemed uncoordinated, stumbling when I walked. I added tinnitus to my ills. I also had gynecomastia (male breasts), muscle weakness, confusion, and penile numbness. I believe my penis is about an inch shorter now but without an erection I cannot really tell.

Luckily for me my wife of over 40 years is very supportive. She is not happy about the lack of sex, even at 60 she was enjoying a healthy sex life.

We have stumbled along hoping that things would just get better naturally. I have taken no new drugs or supplements, have not experimented with any of the substances mentioned here on the Forum.

In the last couple of months, two things happened which I must mention.

First I had an appointment with my principal provider. I tried to explain PFS to him and he had no interest. I had written the words post finasteride syndrome on a paper for him and he would not even take it. I told him that my AndroGel prescription was about to run out and asked him to extend it, and he refused. I understand it is my fault for not getting a new urologist yet, but I was hoping to find one that was savvy about PFS.

I asked him to do a blood test for the other values that are often mentioned here, and he refused saying that he had no reason to and insurance would not cover it.

My blood pressure had also increased over the previous 6 months, and the doctor doubled my doxazosin dosage from 2 mg to 4 mg per day. (Doxazosin is also helpful With BPH.)

After increasing my doxazosin dosage, over the next several weeks I realized that my brain fog was lifting. I felt minimally better physically, but I was hopeful for the first time in months. For the first time in months, my acne cleared up!

After about two weeks of actually almost feeling good, I completely ran out of AndroGel. Then came a real crash.

Androgel clears out of your system in just days. That weekend I could barely get out of bed. For 2 days I laid in my bed with aches and pains. When I crawled out of bed into my easy-chair I laid there and dozed. My aches, and my muscle weakness were worse than they’d ever been. The acne returned with a vengeance, on my cheek and chest.

The worst effect that I felt now, more than any other, was the suicidal ideation. It beat into my head day and night.

I wondered if the TRT had been propping me up over the previous six months, saving me from the worst side effects? I had been taking 82mg/day. My testosterone had stayed level before, during, and after Proscar. However when I ran out of AndroGel, it tested at 25.

I absolutely force myself to go to work everyday. I’m 6 months away from retirement and we must have the health insurance.

An orthopedic surgeon that I went to about my aches and pains provided me with a prescription for benzodiazepines for my pain and sleep aid. When I read on the Forum, and Googled, what these can do to you, I never took any of them. But now I have 40 of them sitting in a bottle calling my name.

Currently I am a wreck. I am sure this is PFS, and ask that no one dare tell me it’s just hypogonadism Gone Wild. I read other members make statements that hypogonadism precludes PFS, and dare wonder why they think they’re experts.

And that’s my story. I waited longer than usual in case everything went away. Also it’s not always been easy to put these thoughts down on paper these days.

I wanted all this on the record, in case it is a help to any other members. Jim

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Hi Jim, First off I want to tell you I’m sorry for what you are going through. You have come to the right place, you are not alone. I am 61 and also did 5 mg fin for 3 months for BPH.
I have been off Fin for 2-1/2 years. We have a lot of the same side effects as most people do here. I have found a few things to share with you.
This community changed a lot of being despondent as I was no longer singular in this.
I have found low carb/keto diet with periods of fasting helped me so much.
Daily cardio/ exercise Expecially swimming helped crashes and brain fog for me.
Don’t try and fix this with supplements or experimenting as often this can make it worse.
As a former medical professional, I believe Androgel is not what you need right now and probably causing your skin issues.
Anxiety is not your friend, it makes PFS worse. Do what you can to lessen that.
You are in your 60s like me, you have a loving wife and sounds like a great/ blessed life to this point. Life may be altered because of finesteride but do not allow it to define your life.
There are great people here in this community. Some in pain too but many with stories of managing and recovery.
Reach out anytime to vent, journal or to find people with whom you have this in common. We are always here for you.

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Thank you for writing your story out. I know it’s something you’ve been meaning to do for a while and it’s not easy to put in all into words when you’re battling through this condition.

You are not insignificant here at all, please don’t think that you are. Your presence here is valued @JimWildman.

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Seconded, wholeheartedly. While I wish none of us were here, I’m glad both you and @Akiyah are here.

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@Greek @Akiyah @Tzinkman
Thanks for your support. I am certainly blessed to have a supportive wife, so I needn’t go through this alone as so many here do.

Many years ago, I used the Atkins diet to successfully lose over 50 pounds. Alas, you can’t eat the same food afterwards, or the pounds return! But I am considering the Keto diet as something I may have success at.

I did not have problems with acne throughout my time using Androgel, which is actually reverse from the norm. After I used finasteride the acne hit severely, again just the opposite of what is normal since most PFS sufferers have dry skin.

I don’t know if I could stand it if my testosterone level remains at 25 or less without TRT. Presently, I have no choice. I guess I’m into an involuntary, enforced non-TRT trial period! Jim

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Hello Jim Wildman, I had an activ sexlive like you to the age of 60. Finistarid prescriped from the urologist transformed my life into a Nightmare. All the symptomes told by every member of propetia help say hello to me. One after the other. The Most horryble thing ist the total fatigue. I’m tired all the time. Muscle atrophy. Weight loss. Someone like a god had hold my Penis unshrunken in good shape and connected to my Brain. Sometimes able for Erections. Sometimes nothing. Burning feets. I feel a New Sensation an some minutes later I can ready about this in the Forum. Same with the doctor. For Acne I m waiting. I transformed from a good shaped 50 to an old weird man. The best thing you have is the love of your woman married for 40 Years. So you never stay allone. Maybe this f… deasise will attack only sexuell activ older men, or Youngsters…My best wishes from old Europe to you. WE and Akiyah are the Chairman of the Beaten…

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@Exsexgod
I just found this message, sorry for the delay in responding.
You’re new to this, and may find your symptoms lessen with time. There are actual recovery stories here! Stay positive!

As for me, it’s been two years now. Still suffering from total ED. Gained 50 lbs at the onset and can’t lose it. Acne only occasional now, not as severe. Constant fatigue. You get the idea.

Still, I make my way through each day hoping for a brighter tomorrow. My loving wife makes that possible. Good luck. Zum wohl! Jim

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ED the cock witch doesnt function any more and fatigue the loss of testosteron drive are my main problems too. I visit a Neuroendocrinologist the second time, knowing that he has only symtomic skills and no causual Treatment. I had a stunning Ex girlfriend on my Sofa, when I get weak. She was waiting some days. So you stay with your loving wife! I stay allone, but I have a little daughter, living with her mother. I Just have to Clean Off the horryble Set Off with my Ex girlfriend, than live goes on. I Wish you a going in in Recovery
Grüß Gott from Germany.

(Thanks to @Wintermoon for change of title, and also @Exsexgod for inspiration. )

Update to my story:

I am now at the tail end of three years of PFS torture. As I hobble into year four, this entry will update my condition. If you have read my initial member story, you will see where I am coming from.

SEXUAL

Before I started taking finasteride my wife and I, even into our sixties, still had a daily sex life. Within months my erections were gone, and I have not had sex for nearly three years. As big a loss as this would seem, it is minor in comparison with my other health issues… I haven’t had a hint of an erection for three years now. My penis before was 6" flaccid, now it has shrunk to half that. I have the urine dribbles, and need to take a leak every few hours, day and night.

AUDIO/VISUAL

I am plagued with constant tinnitus in both ears. My hearing has also deteriorated and I’ve been told I should get hearing aids soon. My vision has been plagued by eye floaters, and sometimes it is difficult to focus. I know I need new glasses, but wait to see how much more vision deteriorates.

PHYSICAL

My physical condition has deteriorated steadily. My coordination and balance are off, I walk like a drunken sailor. My muscles are wasting, and I am exhausted from morning to night. My wife forces me to arise each day, but I have trouble simply getting up from my easy chair. I feel so tired I expect my heart to cease beating.
My joints ache unceasingly.

MENTAL

Many years ago at the University I tested in the genius level. Now it is hard to write, it has taken me two weeks to put this entry together. My mind is frazzled and I can’t think of simple words when I speak. I have had this brain fog for nearly two years.

I was writing a book and was about two-thirds of the way towards the ending. It was a story about a man taking a trip across country… I recently reread what I had finished so far, and despaired knowing that I’ll never finish it in my current mental condition.

THE ARTS

Perhaps this could be included in the mental section. I have always enjoyed music and prior to PFS I sang in the church choir, and also sang solos. I can no longer sing because I don’t have the wind in my lungs to sing more than one verse. My singing volume is barely at conversational level . Also I cannot remember the words to songs I’ve known for years. I have not listened to my stereo and CDs for over two years because I find no joy in them anymore. (I call that music anhedonia.)

I cannot play the guitar any longer, I cannot remember the chords and my fingers don’t work right.

EMOTIONAL

I have experienced emotional anhedonia. I sit next to my wife and know I love her, but do not feel anything. My 90 year old mom is in a nursing home; while I am a dutiful son in forcing myself to visit her despite my fatigue, I wonder what I will feel when she passes?

I frequently feel the urge to end my life, the thought springs forward from the dark recesses of my confused mind. This death wish sometimes will pass in minutes, or may possess me for days. I am 67 now, and wonder if I can continue to fight this battle. My life is near its end anyways.

There is probably more, and I will use this space for updates. I wrote this to get my condition on the record.

I have asked my wife to inform you if I were to pass on for any reason. Your fellow suffering victim, Jim Wildman

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原谅我用中文留言,因为我实在是没有用翻译器翻译成蹩脚的英文的动力了,你说的症状就像我的一样。

你的今天就是我的明天,我快24岁了,感觉就像233岁一样,我走路的感觉就像“杰克•斯派洛”,我有巨大的脑雾和焦虑,我的脑子里像装了一坨屎,昏昏沉沉的,好像凝固了一样,我的头动不动就像着了火一样痛,我的嘴张不开,我的呼吸有些困难,我的学生说我说话声音小,但我真的再无法大声了,说真的,如果按照这个进度“自然恢复”下去,我可以先在床上躺三十年。

你67岁了,太讽刺了,像你和 @Exsexgod这样的老年人,看上去时间似乎是有利于你的,你们不可能像20多岁生病的人一样困在这个笑话里二十年,三十年,死亡竟然给了人希望,说实话,我觉得你有可能看不到我们这些年轻人的结局了,但你有过完美的青年,壮年,如果有可能,你还会有一个奇迹般的晚年,你的人生不会残缺太多,谢谢你的坚持!

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It’s the time shift.

Jim has lived 63 years, I have lived 59 years before the pharma war machine killed our life’s. Jim has had 4 years more than me! What would I give for 4 normal years more. Unbelievable!

So many guys fucked in the mid thirties. 15 years more of a wonderful life, than the real young guys slaughtered for pharma profit in their early twentieth

And than real awful childs destroyed from pharma machinery with Accetuane and PSSD drugs.

In every period of the time frame we are victims of lobotomy and castration, while all the others live their funny lifes.

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Dear Jim, to your heart breaking update I’ll answer tomorrow.

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I did get a chuckle out of that, @baitongWu. Old people!

The average life expectancy for males on my father’s side of the family is only 58 years. I have out lived all my male cousins and male uncles. I should be satisfied with that, right? Jim

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Are you planning on going back on TRT or did you abandon that ship?

Just wondering because if you are truly hypogonadal, not having any T in your system is probably worse than TRT. Whatever people on this forum thinks. While it might not cure your PFS, it could at least help you feel decent. Even if our AR is fucked, estrogens will help with mood, and even muscles to some degree (ERb helps muscle protein synthesis).

Sounds like you felt better when on the gel than when it ran out. Your call in the end of the day but my $0.02.

@Cbrandel
Yes, I should clarify the TRT situation. The following is from my original post:

I was only out of Androgel for a short period in '20. I found another urologist and restarted TRT, albeit with generic. I don’t believe any of my current symptoms are due to that 4 week gap. Indeed, I shudder to think how much worse I’d be without TRT.

You are right, I was more miserable during that month without the TRT, if that seems possible. Jim

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Not aimed at anyone in particular… I saw it and thought I’d share it. Jim

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There was a life I enjoyed the morning and I enjoyed the breakfast as a cult. I prepared my kodiak salmon norwaygen fresh goat cheese dill cream on swedish french herbs crispbread rounds. Nice coffee with milk foam and listen to carnivals and old fashioned party hits or sailor songs.

I had a plan for every day. A Nordic Walking around the lakes, a bicycle tour through the Netherlands near to my hometown, to swim in our lake in the summer, picking up my daughter from school to spend the weekend, fiancee with a bottle of cremant…

In the morning organize my live
Making my household everything with fun.

This was my life. Interrupted by a criminal urologist a backyard bungler like and pharma lobby.

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Something strange happened yesterday that I would like to have put on the record.

My member story tells about the anhedonia that I have experienced the last several years, beginning with a crash at the tail end of year one. Anhedonia hit me in three ways:

Musical: For nearly two years I found no joy in music. A month ago I started to listen to the tunes again (and started a conversation here about favorite music.) Enjoying music again felt wonderful!

Sexual: My first year of PFS I was devastated by the loss of sexual ability. Like our friend @Exsexgod, I felt like a ruined man. Then, that crash removed all cares about being neutered. For two years, I have had no interest in things sexual. This anhedonia remains fully intact.

Emotional: This is my concern today. For two years my emotions have been dead. No happiness or elation, but no sadness or dread, either. I’m just emotionally non-engaged. Until yesterday…

One of our dogs became deathly ill. For a week we tried to nurse her back into good health. As is the new norm for me, I felt no emotional investment. “She lives, she dies, makes no difference.” Finally, we decided to euthanize her. Took her to the vet, to the exam room, the vet tells us to say final goodbyes…

I put my face into her soft neck fur to say goodbye…and broke down sobbing. I blubbered like a child. I shed two years of tears. Finally the floodgates dried. I felt sadness the remainder of yesterday. Could this be the end of my ice age? I could only hope…

But here’s the kicker: I awoke today and that cold feeling has returned. The anhedonia affecting my emotional responses is back. After my musical recovery, and the crying jag over a dead dog, I wanted to believe some recovery was imminent. One step at a time. But apparently not yet.

Any thoughts on this?

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For some reason very strong emotions do come through sometimes. For instance when I was talking to my mother about her being the only reason I’m still continuing I had wet eyes for the first time in 1.5 years. Every once in a while I can still laugh at something, but the feeling quickly subsides. It’s not like true happiness.

I’ve had some thoughts on why this would work this way. Why we only feel emotions for short durations “in the moment”?
I think this has to do with our dopaminergic system being shut off or functioning at very low level. For instance, when someone or a pet dies, part of the reason why we used to (as non PFS victims) cry is because we are already actively thinking about missing the moments with the person or pet. If the dopaminergic system is not functioning, which is clearly the case in many PFS victims (either directly or indirectly by an unknown mechanism), we are not able to look forward to things, so missing these things is something we cannot feel anymore either. Because we simply cannot “feel” the strong emotions of missing something, if we can not look forward to them in the first place.

I hope I’m making myself clear enough.

Jim, I was wondering, when comparing yourself to other men your age, would you think there are many men who wouldn’t notice PFS as much as yourself? Would it be plausible that they’d think “Oh well, I have prostate problems, so I am not too surprised my libido is getting worse, I’m also getting older”.
Or do you think acquiring PFS is such a big difference every man will notice?

I’m asking because there are literally tens of millions of men taking finasteride 5mg or dutasteride for prostate hyperplasia. There must be hundreds of thousands of men among them with PFS, I would say.

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I have PFS from Proscar generic against benign prostatic hyperplasia too. Normally elderly men get it if they can’t pee any more to prohibit a prostate surgery. The majority is in the end sixties and has lost sexual activity over the years.

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