OhMan's Story: EMERGENCY. Brand new severe PFS symptoms after brief use

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, nizoral, pura d’or hair thinning conditioner with saw palmetto, Alfatradiol

What dose did you take (eg. 1 mg/day, 1 mg every other day etc.)?
Finasteride: 0.25mg 3x over the course of four days.
Alfatradiol: used for a month and a half.

What condition was being treated with the drug?
Mild androgenetic alopecia.

For how long did you take the drug (weeks/months/years)?
4 days, with one off day.

Date when you started the drug?
Finasteride 9/21/23
Alfatradiol early August 2023

Date when you quit the drug?
9/25/23

Age when you quit?
30

How did you quit (cold turkey or taper off)? I took a tiny crumb of the pill on 9/26, otherwise cold turkey.

How long into your usage did you notice the onset of side effects?
ED and mild numbness happened two days in, prompting me to consider stopping.

What side effects did you experience that have yet to resolve since discontinuation?

Constant pain in the penis, testicles and prostate!
Total lack of erections save for two extremely weak and constricted morning woods.
Penis looks drained of color, examination at ER revealed “nothing immediately wrong”
Total insomnia. 2 hours of “sleep” a night. Strange, impossible to describe “dreams”.
Sudden total dryness of all mucus membranes, eyes and skin.
Steatorrhea (oily, bile smelling bowel movement never experienced before now)
Lingering of the same bile smell in nose.
Dehydration despite urinalysis proving I am not clinically dehydrated.
Severe brain fog, waxing and waning.
Joints are going absolutely haywire, popping with any substantial movement or pressure.
Heart palpitations. Heartbeat palpable with hand on chest. Heart rate has been high, soared up to 150 a couple times just from walking from one place to another. Abnormal ECG where it was mostly normal about a year before.
Weakness.
Cold, numb hands and feet.
Warm pain occasionally near liver.

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
[ ] 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
[x ] Confusion
[x ] Memory Loss / Forgetfulness
[x ] Stumbling over Words / Losing Train of Thought
[ ] Slurring of Speech
[ ] Lack of Motivation / Feeling Passive / Complacency
[x ] Extreme Anxiety / Panic Attacks
[ ] Severe Depression / Melancholy
[ x] 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)
[ ] Muscle Wastage
[ x] Muscle Weakness
[ x] Joint Pain
[ x] Dry / Dark Circles under eyes

Misc
[ x] Prostate pain
[ ] Persistent Fatigue / Exhaustion
[ x] Stomach Pains / Digestion Problems
[ ] Constipation / “Poo Pellets”
[ x] 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)

What (if any) treatments have you undertaken to recover from your side effects since discontinuation of the drug? None, really. Hydroxyzine for sleep that doesn’t work.

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 but see CBC blood tests and ECG below…

Anything not listed in the above questions you’d like to share about your experience? There are several outlier factors in my situation that I will either detail below or add later in comments/edits.

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

I have used nizoral and Pura D’or conditioner with several anti-DHT/5ar ingredients without much issue for a couple years. Tried a couple weak bullshit topical products. I recently added alfatradiol about a month and a half to two months ago. Went through one bottle. Had always feared the sides of fin but recently got lured in by the youtube influencers about how it’s not a big deal and you should at least give it a shot.

Well here I fucking am. I ordered Finalo through alldaychemist. Even commented to my gf on how sketchy it was to do so. Cut one fucking pill into quarters and put them in gel capsules. I took two for two days, noticed some mild numbness so I skipped a day. I took the third the next day. Felt a little off, had a really weak erection and tested it by masturbating. Took a third pill the next day. Still mild sides. The next day I took literally a little crumb of a pill. Went to bed feeling mostly fine. Woke up at 4am with a bunch of jittery energy. Started having sexual thoughts and got a full-strength and size erection. Didn’t do anything with it, just let it go back to flaccid. Then couldn’t get back to sleep. Extreme neuroinflammation (hearing songs excessively in my head and thinking random thoughts intermittently)

Then, a couple hours of later, it started. My dick slowly started throbbing with pain. I thought that was odd as normally people only report ball aches, not the penis too. And then it just didn’t stop. It hasn’t stopped, save for a few moments of relief. My penis and scrotum became numb to the point I could barely feel the hot water bottle I was using to try and relieve the pain.

I decided to stop taking the fin at this point, as most people would. Maybe I should’ve tapered? Idk but the symptoms have been an unbearable hellworld onslaught since then.

My skin, eyes, mouth and even anus all became bone dry over the next couple days. I didn’t even realize your anus could be dry.

I was pissing constantly. Any time I drank water I would just piss it out 10 minutes later. My prostate began to ache and feel full as well. My skin has loosened up so fast it’s horrifying. I have visibly less definition accordingly.

I took a shit and it was tiny black pebbles with a ton of oil. Steatorrhea apparently. Not something I even knew about. Must be nocebo, right? My heart began pounding, reaching 150bpm just walking to the kitchen. Every little creak or pop or pain I normally have is 10x worse. My mild gingivitis is now painful for pretty much the first time.

I went to the ER, they checked my penis out, CBC, ECG, URINALYSIS.

The labs that came back immediately were normal. The doctor said my penis looked ok, no injury and good blood flow. I told him the color looked drained. He said “finasteride hits receptors that can cause the blood vessels to clamp down”. He was helpful and not doubtful that this was from fin in some way, told me to come back if any blood happens.

The ECG just came back before I started writing this. Here are the findings:
Sinus rhythm Marked sinus arrhythmia Incomplete right bundle branch block Nonspecific ST elevation Moderate right axis deviation ** borderline ECG **

…In January I had an idiopathic episode of peeing blood with no known cause or bacteria. Maybe it was related to SP/Niz use looking back. Who knows. Anyway, they did an ECG then too and found right ventricular conduction delay. But not all that.

Complicating factors: I reached the end of my bottle of alfatradiol around when I was taking fin. I apparently hadn’t shaken it very well, because the end was much thicker than the usual application. Didn’t wash it out at the time. Great.

I am a smoker. Been trying to quit. Day 3 or 4 of this experience was when it got scary enough to completely cease smoking. So I am simultaneously quitting smoking at onset.

Not only am I quitting smoking, I am quitting kratom which I was also a daily user of. A few relevant things after looking at some research around these parts. Kratom is competitively metabolized by the CYP3a4 enzyme like finasteride. Also, while not the same, there was a guy who claimed to be cured after he got addicted to and then quit heroin. Obviously kratom is not as strong in terms of metabolic or dopaminergic effect. But maybe this will give me some sort of edge in recovering. Probably copium.

Lastly, I have experienced two weird crashes with similar symptoms before. I’m exhausted so let me just copy paste from my fb group post about this:

Like I said, I suffered from a similar crash of unknown origin in 2020 (probably not covid since I got that twice since then) minus the pain and oil shits but with more intense brainfog. Recovered by and large from that, so I’m optimistic about my system’s ability to recognize and deal with something like this. But the genital pain/twitching is horrifying. Worried there is serious neuropathy going on there. The ER doc claimed he would’ve seen that in bloodwork/urine tho.

Also relevant, my OTHER weird endocrine crash was in high school, which in retrospect I now believe could’ve been from taking my dad’s multivitamin which had saw palmetto in it. I’ve also had brief runs on a couple of SSRI’s over the years."

I need some help and some sort of reassurance. I am fairly certain this is an aggressive onset PFS. The above variables probably explain why it is so intense and hopefully provide some insight for those who are unfortunately knowledgable about potential etiologies.

I just want to sleep and for my dick to stop hurting first and foremost. We’ll go from there. If neither of those stop in the foreseeable future I literally don’t know if my heart or mind will be able to make it out of this experience without imploding. I’ve done a serious crash course on possible explanations over the last couple days.

Lastly I will include my CBC and metabolic results downthreas, which could be VERY useful to us all as I went to the hospital a month ago for a throat inflammation issue (another factor I don’t have the energy to get into right now) so I have basic bloodwork for a month ago (pre crash and only on alfa with very minimal sides if any) and now (immediately after crash) and some variables are wildly different between the two.

Thank you and wish me luck. Does anyone think its possible I could at least recover enough to be able to go back to work so I don’t have to give up my independence? I fucking hope or else shit will be very ugly.

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 [ ]

I’m so sorry. Truly. I hope it passes, as it seems some do early on.

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Depends on your job and work environment and how your symptoms progress. I’m a pretty severe case and still working almost two years in. Here’s a work thread with some patient reports.

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I have visible changes throughout my entire body. It’s been one week since I quit taking any 5ar. I don’t know what I’m going to do. Help

Sit down in the boat if you start to panic and try things it’s more likely to end up worse.

You’re early into this and I know it’s scary, but letting the body do it’s thing is the best thing you can do at this point.

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I think I am actually going to be the first to straight up die from this. My joints have deteriorated to nothing and my diaphragm and heart are super weak. My ears, nose, and jawbone have noticably shrunk. I just pissed a ton of that oily substance that I think is literally cannibalized cartilage and skeletal muscle. All in the span of one week after quitting. My fingers are barely strong enough to type this. My eyes are not moving right.

I think this pfs is exacerbated from my heavy kratom use. Which inducts and inhibits the enzyme that metabolizes finasteride. If you stop hearing from me over the next week or so, this is what happened.

This is potentially huge for sufferers. I want to give my name to someone in case this comes to pass so they can look into it

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are you still here?

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Yes. There have been lots of crazy symptoms and developments of the situation. Went to psych ward and got out. Feel like I have some sort of mild compartment syndrome, which probably happens to all who report physical changes like facial change and muscular wasting, loose skin bad joints etc

I believe that effect is causing a cardiovascular stress and weird events through abdominal hypertension. If I don’t end up totally incapacitated or dead I want to dedicate my life to solving this, which will take so much work. This can’t continue to go unexplained/undocumented.

Hang in there. I’ve had 2 major crashes like this that took months to level out from. Read my sodium buyrate post. I’m still here. Some how. Hang in there brother. It is hell but it will get better than it is now. Your body needs time. I’m a fucking wreck and am doing bad but I’ve been a lot worse physically and mentally than I am now.

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Ps as I stated I’m still.bad but no where near when SB crashed me and how bad my crash was 7 months ago

Everyone is different Given time you might even bounce back

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Well. I guess I’m living proof that even a severe onset case of PFS won’t kill you. Without going into detail too much, it probably came closer than you’d think. I lost 15 pounds in a few days as an already very skinny guy. My heart kept going arrhythmic and I had a couple INSANE neurological episodes. Some of which was honestly suicidally induced. As in my body was so weak at the peak of the wasting that I was able to induce near death experiences by just attempting exercising. The last one landed me in the psych ward.

My whole body is damaged. It’s as if my tendons are all short and calcified or something. It’s become painful in my wrists, back and legs.

I have zero ability to think critically, or abstractly. I can hardly follow a conversation. My mucus membranes and skin are still so dry.

Basically, add in all the symptoms I didn’t check in my post and then a dozen or so more.

My goal in life is now to recover even 20% from where I am and dedicate myself to stopping this.

CBD oil and aspirin together help the pain, if anyone else is even having that symptom.

Among all these symptoms, did you have muscle loss? my entire body is atrophying and I have pain, as if I have developed symptoms similar to autoimmune patients, as the symptoms fluctuate… have you had muscle loss? I saw that you mentioned weight loss, even though you are already very thin, can you tell if you lost muscle or fat?

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I lost both. Heavily, and in ways I didn’t even know were possible. My bones were under a paper thin layer of skin in several spots. My appetite surged since then and I rapidly regained a layer of visceral adipose (read: unhealthy) fat. So rapidly that my bracelet had to be cut off at the psych ward on the second day because it was turning my hand red/numb. The body composition changes have been a cartoonish hell.

Here is what my stomach looked like less than a week into the crash

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The fat loss and the oily urine & stool are 100% interdependent. I peed out all my brown and beige fat pads throughout my body. I don’t think you can replace those, at least not as they were. Same with all the lifelong genetic muscle I’ve lost.

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You took less than 1 mg over the course of four days and are now suffering with these insane, life altering symptoms. This madness needs to stop.

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Thank you. I certainly agree, something needs done about this.

Anyone else lose ability to comprehend complex patterns and visualize/map things out in the head?

This is one of the most distressing symptoms of brain fog. As an artist and musician, this combined with loss of dexterity is driving me insane. I can’t even use my coping mechanisms without being reminded that I am being hindered

I’m going to update this thread bit by bit with more detail on each “set” of symptoms as best I can.

Here is my hand at rest. I believe it to be something like Dupuytren’s contracture. I did have existing ulnar nerve issues but not like this. My palm and thumb are set differently than how they were pre-fin.

Notice the crookedness of the thumbnail and wrinkle lines on the joint. Not outside of the realm of what someone’s thumb might look like, but that’s not what my thumb looks like. There are strange changes like that all over my body now. I can’t tell if it is a connective tendon issue, a joint issue, from the loss of fat and muscle, or all of the above.

Another example, my toes look longer and bonier, and my toenails look dark due to atrophy of fat pads. My pinky toe is usually an inch long fat little nub. Obviously I don’t go carrying a before picture of these things. You can also see where my cuticles rapidly receded on the toenails, where it looks like they have two different sections/colors to them or bits of dead skin on the nail. (Excuse the long ungroomed toenails lol)

And finally (for this comment) my knees are suddenly slightly knock-kneed/crooked. I am also experiencing sudden changes consistent with those of rolled shoulders, scoliosis and anterior pelvic tilt. I don’t know how useful pictures would be for those. This cascade of changes has made my legs, back, neck and wrists painful.

Speaking of cuticle recession, here is a fun one I was able to document:

At the peak of the wasting, I noticed these maroon red crusts on the base of both thumbnails. They flaked off like they were just dirt or something, but given that my cuticles have receded downward, I am pretty sure they were dried capillaries or blood. Sounds batshit insane and impossible, I know.

Penile changes:

I have photographic evidence of some of this but obviously I will spare them here, and again you don’t go carrying a “before pic” of your flaccid penis. I was also already dealing with lowering libido, mild darkening, wrinkling and venous leak before the recent crash.

On Fin:
First change was mild numbness.
Then a couple pains in the scrotum and changes in urinary flow.

Immediately upon stopping, in chronological order.
Constricted, bumpy erections, followed by a normal erection only a few hours later.
Nerve pain in the penis and scrotum. Pain in the prostate. Coldness in the penis. Severe numbness. Hard flaccid. Scrotum moving up and down rapidly. Dark brown, SUPER wrinkly appearance that lasted less than a day. A brief return to looking mostly normal but with looser skin. Back to hard flaccid.

I had an episode of SEVERE nerve pain in the entire genitourinary/glute area, coupled with extreme intensification of brain fog while I was taking Bactrim (sulfamethoxazole) on the urologist’s orders a week or two in.

Since then it has had more “long flaccid” symptoms/appearance and new prominent veins running down the shaft. The pain has mostly subsided (finally, a month in) and in its wake is an excruciating numbness. The glans is somewhat inflated while flaccid in a way I’ve never noted before. Almost as if it is shaped differently.

Same here man. Wrinkly, loose skin, prominent veins, severe numbness, different shape.

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