Warning: restarting propecia will kill you

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)? 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

What is your current age, height, weight? 53, 5’9, 180lbs and dropping

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.)? .25mg/day

What condition was being treated with the drug? hair loss

For how long did you take the drug (weeks/months/years)? 20 years

How old were you, and WHEN (date) did you start the drug? 30

How old were you when you quit, and WHEN (date) did you quit? 53, 11/8/21

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 the first month or so I lost a patch of facial hair. This side effect would continue sporadically during my use, usually it would take a year to grow back. The first time this happened I just lowered the dose from 1mg to .25. Subsequent times I’d stop for a while then restart. The last time I restarted I was hit with full blown PFS.

What side effects did you experience that have yet to resolve since discontinuation? hard to say, had some early onset aging issues that at the time I did not associate with fin…graying hair, cataracts, lactose intolerance. can’t tell if I’m still lactose intolerant, I’m everything intolerant now

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
[ ] 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
[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)
[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
[x ] Constipation / “Poo Pellets”
[x] Vision - Acuity Decrease / Blurriness
[x] Tinnitus (ringing or high pitched sound in ears)
[ ] Hearing loss
[x] Increased hair loss
[ ] Frequent urination
[x ] Lowered body temperature

[x ] Other (please explain)
no sweat or smell, dry wasted skin, facial hair loss, eyebrows falling out, heart palpitations, nausea, collagen loss everywhere, itchy skin with sores and spots, no sleep, constipation, shitting blood, constant nasal congestion, body/pubic hair loss, dry tired eyes, eyeballs loose in their sockets, bone loss, joint pain, tooth/gum problems, back pain, dry feet, severely cracked heels and toes, age spots on hands and face

What (if any) treatments have you undertaken to recover from your side effects since discontinuation of the drug? The side effects of the drug…none, they either cleared up on their own or were treated. PFS is not a side, it’s its own thing that started after stopping the drug.

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)? low free T, Vit D low, BUN high, CO low

Anything not listed in the above questions you’d like to share about your experience?
It sucks

Tell us your story, in your own words, about your usage and side effects experienced while on/off the drug.
Started on 1mg doses around the year 2000 and while it reversed my head hair loss it caused patchy facial hair loss. I went down to .5 then .25mg and stayed there for many years. It didn’t grow much hair but it slowed the loss and served as a psychological boost like I was at least doing something. Two years ago a big chunk of facial hair fell out and I stopped entirely for two years…that’s how long it took for the facial hair to grow back at which point I started back on .25mg to stem the heavy hair shedding that had started (I know now that was from Rogaine, wish I’d figured that out before it was too late). It very quickly attacked my facial hair again so I stopped cold. Couple weeks later I developed full blown PFS starting with low body temp then moved on to zero sweat/smell and skin/muscle wastage. I try to exercise but there’s no pump, no blood flow so it seems I’m just hurting myself. Past couple days have had crazy headaches that can’t be good for the brain. Work has become all but impossible.

So a couple questions:

  1. Is it ok to take Excedrin for the headache? Seems like it might make things worse I’m reading here. The headache was unbearable earlier and I took one excedrin and feel a bit better.

**update: the single excedrin I took for the headache did help the headache and next day I don’t feel any worse at least. The headache I think resulted from jogging earlier in the day or not drinking coffee for the first time in forever, maybe both.

  1. Can something like cialis help the general blood flow issues? Not even concerned with sex at the moment, there just seems to be no fluid movement in my body and everything is wasting. Would cialis help this or make it worse?
1 Like
#2

There’s no clear cut answers here, but in my experience it didn’t help and maybe even made things worse. Also gave me insane lower back pain.

Maybe someone one had another experience and can chip in.

#3

I have tried gaba to relieve myself of the headache I got while using creatine (which increase dht) it helped me instantly. Kept using it, and at one point using it wasn’t necessary anymore, no headaches any longer.

#4

Hi @mstone - welcome to the forum!

I’m sorry you’re in this situation. Not being able to work is terrible, and unfortunately not uncommon among people here.

Anecdotally, it seems like people see the most improvements in the first few months after symptoms start. You might just want to take it easy in 2022 - make sure your diet and sleep is working ok, and then see where you stand.

People have indeed gotten worse from many drugs and supplements, so be careful with those.

(I’ve taken paracetamol, which it’s similar to Excedrin, without any problems, just FYI)

#5

Gotta be honest, I haven’t seen a single positive story on this site. Has anyone recovered after a few months? Seems like anyone who posts about improvement crashes soon after. There were two instances where I had an absolute surge of…testosterone maybe? Where suddenly I was thinking about real life again…plans, work, people, etc. For a few hours. Then crash, back to constant panic and body waste. My symptoms are progressing very quickly.

3 Likes
#6

Then back to constant fatuige and body waste. My symptoms are progressing very quickly. Welcome to the club. I’m 59 yo PFS caught me through Finasteride against benign prostatic hyperplasia. Much to early, normal Medication for 65+.
But here are so many mild cases on the forum too.

#7

@mstone – I think you just have to be patient with your body. You’re already in a very stressful situation – I think you can add to the stress if you’re constantly thinking about how and when it can be over. Mental stress is the same as physical stress – you don’t want to pile on more than you already have.

#8

Understood and I’m not thinking about how and when it can be over. You said ‘people see the most improvements in the first few months’ but I haven’t seen any posts where improvement wasn’t followed by worsening symptoms.

#10

Hm… I can’t say I’ve seen posts like that. I mean, there are a lot of posts from people who tried a therapy that made them feel better initially, but then worse. (That’s why we caution against excessive self-experimention.)

If I were to guess, I’d think that many of the people who have significant improvement in the few weeks or months after stopping probably don’t bother to come back to post about it.

1 Like
#11

Figured I’d post this update here, should show up if anyone searches for lorazepam I guess.

I haven’t slept in three weeks, my ambien just shut off like a switch. Finally out of desperation went to the doc who prescribed lorazepam .5mg. Reading through experiences here was typical…a mix of ok, not ok, and absolute horror stories without enough details to know who suffers from what and exactly what dose they took and for how long.

So to be clear, I suffer from the full PFS magilla. So much decay and wastage that frankly I have no idea what condition my dick is in. Every part of my body is shrinking, thinning, and falling apart, I can’t breathe due to soft tissue wastage in my sinuses and throat and all my homeostatic functions are royally fucked. Heart rate and body temp all over the map, no sleep but for a minute here and there.

Every warning for benzos says it’s not for the suicidal and chronically anxious like PFS peeps and there’s plenty of withdrawal stories that make PFS seem like, well PFS…nothing makes severe PFS look good by comparison unfortunately. But since my next move is a bullet in the brainstem I couldn’t resist that little .5 mg pill after three weeks of no sleep.

Anyway long story long, it did nothing to help me sleep…no surprise there, since it works on the same brain chemical as ambien and ambien isn’t working and also my wrecked head tissue just wakes me up with apnea if I do manage to drift off. It did relieve some of the mental and anxiety symptoms for an hour or two, that was a nice break. I felt like myself again in someone else’s useless broken body. But I did feel in charge, like my home was MY HOME and not just a sad place to pace around waiting for time to pass. Again, one .5mg dose of lorazepam. And when it wore off, yes the anxiety and overwhelmity came back though it didn’t feel worse than before, just what it is which is bad enough.

I won’t be following this up with another dose today*, clearly this loses effectiveness and becomes dangerously addicting. So I would say if you’re not sure if your insomnia is mental or chemical, ambien/zolpidem is a safer route…I used that for years and it worked great until PFS. If you’re a severe PFS case and ambien doesn’t help you sleep, a benzo likely won’t either although if you’re like me and nights have become the scariest, shittiest part of the day then it might be worth an occasional pop for mental relief while you’re considering your…oh let’s call them options.

*that’s a lie I can’t wait to take another one tonight. I am a weak, weak man.

**update next night: upped my dose to .75mg, this time I didn’t feel as mentally solid as the previous night but I did feel like I could sleep initially. Unfortunately my sleep pattern still didn’t change much, awoke many times per hour all night. I realized that while the lorazepam did seem to quiet down my pounding heart, my PFS-induced apnea filled the torture gap and continued to wake me up every time I fell asleep especially if I was on my back. I guess on the plus side it’s hard to get addicted to a drug that doesn’t help.

***update few nights later. Took the full prescribed dose of 1mg. Mental improvement was still not pronounced but sleep did improve this time and for the most part I awoke on the hour, still mostly from PFS apnea. The last hour or so my anxiety returned VERY pronounced and I was glad I’d read others had the same experience because it was REALLY bad and even though the obsessive thoughts were justified I kept telling myself that the severity was from coming down from the benzo and that I would feel better once that passed. And I do, sort of. But the literature is correct, this is not a drug for a permanent physical and mental shitstorm like PFS. It’s for relaxing on a plane.

3 Likes
#12

Also I’m changing the name of this thread…we have to warn people about shit we know, jesus fucking christ.

1 Like
#13

Another insomnia/sleeping pill update, can be found for people who search for Ambien CR or zolpidem ER.

Will start with symptoms again, full PFS… total body decay and wastage, congestion and apnea due to soft tissue collapse in my sinuses and throat, all homeostatic functions wrecked…heart rate and body temp all over the map, no sleep but for a minute here and there.

Prescribed 6.25mg zolpidem ER. Had low hopes considering how completely my regular zolpidem stopped working, figured the GABA mechanism was totally broke. The ER version is extended release so thought it might have a chance of keeping me down. My doc had actually prescribed trazodone when I told her the lorazepam didn’t work but after reading some horror stories here I asked for this instead to experiment.

So this did provide an improvement in sleep. Instead of waking every minute or five minutes I woke every half hour or hour and I think much of that was due to my PFS apnea. This is still a shitty night’s sleep but in the morning I felt more like ‘time to get up’ and less like ‘get me out of this nightmare hell bed’.

It did nothing for the amplified anxiety I feel in bed…the wake cycles were just brutal in that regard and as I sit here I am no less aware of the grim and dire moments ahead and that an end to all moments cannot come quickly enough.

So this is probably the best night’s sleep I can hope for without addressing the apnea and I’m not wearing one of those masks. Afrin helps enough to sleep on my side so there’s that.

**update: a week later the 6.25 zolpidem ER tablet stopped working so I took a second…total dose 12.5mg. This put me out for six hours though I didn’t feel rested when I woke up…literally felt like I hadn’t slept at all.

***update: and a day after that the 12.5mg dose didn’t work for even a second. That’s as high a dose as I’ll go, looks like back to lorazepam.

Fuck this shit is all I can continue to say and heed the warning in the title.

1 Like
#14

Going to add another update since I literally have no idea what to do with myself now.

I miss relaxing with beer on lazy afternoons and there were two beers still in my fridge from before I got this abominable disease. Couple weeks ago I finally couldn’t resist and had one. The next two days I had scary vision disruptions…it was like a thumbprint pattern over my vision. Started right in the middle so I couldn’t read or see clearly in front of me. Then a larger version of the same disruption spread over the top part of my vision. The disruption was the same in either eye and even if I closed my eyes, so clearly a brain level event. Both occurrences lasted about a half hour before drifting off to the side then disappearing. I was afraid this would become permanent but it hasn’t recurred since. I also haven’t drank any alcohol since and am deathly afraid to do so now.

Fun huh? Heed the warning in the title.

#15

Magnesium Citrate 250mg softgel taken mid-day…touted on this site as a catch-all for a bunch of symptoms, I guess this is really just a laxative and I can report I took a great big shit the following morning which is fine but hasn’t increased my will to live.

**update took same dose again a couple days later, same result. As a laxative it’s not bad…getting good results in that regard. Need to drink a lot of water with it especially with dried-out symptoms.

1 Like
#17

Hi mate , sorry to hear the shit that’s going on with sleep.
I have suffered horribly in this area and have been prescribed several things over the past 2.5 years.

First up the lorazepam dosage should be around 2mg mark , 0.5 is gonna do next to nothing for the extreme PFS Insomnia (even for people with “normal” insomnia 0.5 Lorazepam would do minimal impact - especially someone already a regular user of a Z pill (zolpidem)

A similar thing happened for me when I first got insomnia , they prescribed Eszopiclone (or Lunesta , another fairly high power Z drug ).
They gave me 2mg at first and it did nothing. That made me freak out as I knew it was a powerful drug for sleep and I took it and got zero hours sleep.
The same doctor then increased it from 2mg to 3mg….and this did it! I finally got 6 hours straight sleep and felt great .

It could be as simple as this for you , a slight increase May do the trick.

Yes , Magnesium Citrate is gonna have minimal effect on Sleep and Anxiety ….best one would be Magnesium Glyncinate or Magnesium Taurate to get sleep sorted.
I hope you get something figured out, I’ve been there and it’s like living in hell

#18

Thanks, because advice and warnings are all over the map here I figured I’d start low and work my way up. I can’t tell at a glance if you have my symptoms or not, so I don’t know if what’s safe for you is safe for me. Just like Magnesium…bunch of posts saying citrate is best and now you say it isn’t lol. I think any advice or report on a therapy should include a brief summary of symptoms to assess relevance.

**took your advice a little bit and updated the experience above in the lorazepam section

#19

Prime symptoms: full PFS… total body decay and wastage, homeostatic functions wrecked…heart rate/body temp/sleep, no evidence of AR activity, skin completely dried out and icky feeling

So something I’ve noticed very consistently about sleep position. Sleeping/lying on my left side increases anxiety and nausea. I tend to that side now to reduce apnea. Sleeping/lying on my back decreases anxiety and nausea, feels almost normal at times. I find sleeping on my right side awkward so I don’t stay in that position long enough to test. No idea what this means but could relate to the oft-reported left-side tendency of symptoms which also applies to my case.

Also a new symptom that I don’t see much talk about here…feet so dried out that the soles are cracking down to the meat and making walking difficult. Got some prescrips from a podiatrist but if I’m the only one with this symptom I won’t bother with a results form…consider it a vent for now.

**update: while the foot cracks look as bad as ever, like I was stabbed with a scalpel, the pain has mostly subsided, not sure what that means. Also the left side sleeping anxiety is absolutely a thing. I was getting no sleep last night but without much anxiety. At some point out of nowhere I was full on anxious and suicidal then realized yep I’m on my left side. Moved to my back, anxiety vanished. Fucking freakshow but more evidence of brain damage.

And really here’s our big challenge…can you imagine explaining this to the unafflicted? ‘Yeah so when I sleep on my left side I want to kill myself but I’m ok on my back’. Instant mental ward.

4 Likes
#20

I remember the day this started. I had restarted Propecia after a long break then stopped due to facial hair loss a week earlier. I ate breakfast and drove to the mountains to go skiing. By the time I got my stuff together and got out on the snow I realized I was hungry again to the point of dizziness which seemed odd…I could usually go several hours before stopping for lunch. I went into the lodge to get a slice of pizza but knew my usual one would not be enough and I got two.

I immediately knew something was very wrong with my metabolism and my mind raced back to thread topics on this site that I’d seen but never paid attention to. ‘Muscle wastage’, ‘Collagen loss’, ‘no body odor’. Panic set in. I felt a little dizzy for the rest of the day. By the next morning the skin below my biceps had a crepe paper texture and my usual resting pit-stank was gone.

It was like falling off a building where all medical knowledge and human connection was on the roof and the only end is hitting the ground.

3 Likes
#21

I’d be interested to know how quickly skin can fuck up like this. For me I can’t say as I only became aware of it after the event and don’t know how long the process was. It’s a bit like we are all trapped on that beach in the M Night Shyamalan film Old (which I’ve not seen but am aware of). Maybe we might be a gift to those studying aging if certain signifiers of age can occur for us so rapidly. I did write years ago to someone who wrote a paper on skin aging but heard nothing from them. I thought that our experience would be of interest.

1 Like
#22

Seems obvious to me now…the health of our soft tissue is a constant cellular process that degrades the moment PFS disrupts homeostasis. I’m actually more surprised that it doesn’t flat out kill us. It would be a lot more convenient if it did and likely would have been addressed a long time ago.