18m on fin with worsening side effects and then a crash

[Mayflower]

Aloha folks,

First off, let me say that I’m incredibly thankful for this community and resource that it provides to folks like me. The amount of information and dedication that so many users (as well as the organizers) is a god send to what is for so many people a really dark time. To all of you, thank you for the time that you have provided in making this community and resource available.

Short Preview:
I experienced severe ED side effects 16-17 months after starting. Other stuff was going on in my life so I wasn’t sure if it was the fin. I quit a month later. I’m very early into this (5 weeks since quitting) but experienced a crash 2 weeks in presenting with many of the classic and scary PFS symptoms. I’ve since recovered slightly but still have libido, ED, apathy symptoms and insomnia.

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?
29, 5’11" 190lb

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.)?
1.25mg/day inconsistently

What condition was being treated with the drug?
MPB

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

How old were you, and WHEN (date) did you start the drug?
27

How old were you when you quit, and WHEN (date) did you quit?
29

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

How long into your usage did you notice the onset of side effects?
Perhaps noticed very very very mild amount of ED early on. About a month before I quit I began having a lot more trouble. I didn’t necessarily know that something was up because it was all with a new partner so I think maybe that was the reason but when I needed to use way more Viagra than I have ever needed for the occasional whiskey dick episode, I knew there was an issue. That and even masterbating was a major challenge and so I stopped

What side effects did you experience that have yet to resolve since discontinuation?
**Remain persistent today: ED, lower libido, low ejaculate volume and less interest in things I normally enjoy. **
Briefly experienced: 2 weeks after quitting I feel that I had a crash in which I experienced some of the severe symptoms (brain fog, rubber dick, inability to have an erection even with porn, anxiety, no morning wood, insomnia). That was scary. Luckily (for now) that only lasted a week and I’ve recovered to where I am now (5 weeks out as of today).

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
[ ] Loss of Morning Erections
[ ] Loss of Spontaneous Erections
[ ] Loss of Nocturnal Erections
[ ] 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
[ ] Memory Loss / Forgetfulness
[ ] Stumbling over Words / Losing Train of Thought
[ ] Slurring of Speech
[X] Lack of Motivation / Feeling Passive / Complacency
[ ] Extreme Anxiety / Panic Attacks
[ ] Severe Depression / Melancholy
[ ] Suicidal Thoughts

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

Misc
[ ] Prostate pain
[ ] Persistent Fatigue / Exhaustion
[ ] 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
[X] Lowered body temperature

[ ] Other (please explain)

What (if any) treatments have you undertaken to recover from your side effects since discontinuation of the drug?
Herbs that don’t seem like they could do harm. Ginseng, - L-arginine, Fenugreek, L-carnitine

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 wish! Getting bloodwork soon.

Anything not listed in the above questions you’d like to share about your experience?
the worsening of symptoms happened after switch from name brand propecia to a generic (3 months into the generic)

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

---

Formerly healthy youngish (29) male here. I’m 5 weeks off of finasteride today. Took it for 18m and began experiencing worsening sides at month 16-17 which also happened to coincide with some other stuff going on in my life and so I didn’t connect the two. Without ED medication I would have been unable to have sex in that last month. Even with ED meds it was difficult. It was with a new partner who wasn’t super experienced and condoms were a thing so I thought it was a result of that. Just in case I stopped finasteride about two weeks after I noticed I was having issues. Sexual side effects persisted after quitting. I also felt like I lost interest in things that normally excite me. After quitting I don’t think I ever experienced a period of increased libido or anything that I’ve heard some people describe. I did experience a crash about two weeks after stopping. Sudden rubber numb dick. Anxiety. Inability to get an erection. Brain fog, no morning wood. Inability to sleep more than 4 hours. “PFS patients present with a list of homogenous symptoms came to mind”. Scary.

I’m not a porn dude, but I tried. Not even porn could summon my limp decrepit trouser snake from the dead. Bummer. My shriveled bloodless johnson felt like the one ring in my pants bending space and time around it.

That lasted a week and I’ve somewhat recovered. I’m now 5 weeks out and no longer experiencing the scarier crash symptoms. Just low libido, pretty bad ED, loss of interest in things and some insomnia.

How bad is my ED? With extremely concentrated effort and a lot of manual work I can get 90% hard once per day. But it is skittish and disappears fast. There’s no way I could have sex without ED medication which I have not tried yet. Libido is low, I feel like its not high enough for me to want to try to go out on a date even if I knew ED meds would work. I have been masterbating once per day but mostly as a test and it is not easy. I do wake up with morning wood.

About me? Always have been a very masculine guy, square jaw, and I barely need to workout to build muscle. Run ultramarathons. Crushed it at work doing engineering project management. I would say that my sexual function prior to finasteride was NOT in the upper 50th percentile of males though. My refractory period in my twenties has always been hours at best and not minutes. I would say that I easily got whiskey dick or pilly willy hence why I already had ED medication. I’ve always eaten very healthy living on mostly veg and seafood diet. Kind of a bummer because I wish I had those lifestyle knobs to turn in my situation. At this point, running and working out does make me feel good which gives me some hope that my form of PFS is perhaps treatable with hormonal adjustments.

Anywho, wanted to post my story and situation and get involved by filling in the survey and putting my experience out there for others to learn from.

Questions for the community and for those that have been through this.

• Given how my first 5 weeks have gone, should I feel optimist or move on to acceptance at this point?
• Any insights into what the worsening of my symptoms on fin means as well as the recovery from the two week crash?

Initial next steps on my mind:

• Focus on mindfulness, meditate
• Get full hormonal bloodwork done
• Get more strict on my diet
• Take up yoga
• Hire a person trainer to get me up to speed on olympic weight training

Cheers and thank you all

[Tzinkman]

Hello @Mayflower and welcome to the forum. Thank you for the kind words about the community here, they are appreciated. Reading through your story, I would say you do have reason to be optimistic given how relatively little time has passed since you ceased using Finasteride, and how you have seen improvements already in that time frame. Whilst nobody here will be able to tell you how this condition will unravel from here for you, your improvements and positive response to exercise are certainly encouraging signs.

In addition, we state that at least three months should pass without resolution of all symptoms before somebody should definitely consider themselves to have PFS (also the minimum time that should have elapsed before taking the Patient Survey). At five weeks, it’s still possible that you may have had an adverse reaction and it may resolve itself.

My advice at this stage would be to try to not over stress yourself with what is happening (if possible), avoid alcohol and/or drugs, perhaps be cautious not to over tax your body in the gym and generally look after yourself as best as you can for the coming months. If things don’t improve or decline, we’ll be here to support you as best we can but it’s worth keeping in mind just how rare this disease appears to be and that people do have bad reactions like you have had then make a complete or near complete recovery some months down the line.

[Mayflower]

Thanks @Tzinkman. I’l plan on waiting for the three month mark to fill in the survey. Hopefully things improve.

6 weeks today since stopping and that my symptoms remain the same since I recovered a bit from my crash. IE I still have the same level of ED, Low libido, insomnia and anxiety.

Test results came back yesterday and look mostly normal. If anyone has any insight into what these might mean please share.

IGF-1 is the only one that came back out of the reference range high.
T-Free, FH, DHEA, TSH look like they might be on the low side.
SHBG might be on the high side

T - Serum: -------667----264 - 916
T Free:------------14.3----9.3 - 26.5 Seems low
LH:---------------- 5.3 -----1.7 - 8.6
FH:-----------------3.5 -----1.5 - 12.4 Seems low
DHT:-------------- 43-------No reference provided
DHEA:------------214-----138 - 475
TSH:--------------1.76-----0.45 - 4.5 Seems low
Prolactin:-------- 8.7------4.0-15
Estradiol:---------24.2-----7.6-42.6
IGF-1--------------302.----98-282. High
Progesterone—.2---------0-0.5
SHBG-------------41.2-----16.5-55.9 Seems high

[Jaime]

@Mayflower

My shriveled bloodless johnson felt like the one ring in my pants bending space and time around it.

This made me laugh. PFS in middle earth: one ring to rule them all, and in the darkness bind them.

@Mayflower

T - Serum: -------667----264 - 916
T Free:------------14.3----9.3 - 26.5 Seems low
LH:---------------- 5.3 -----1.7 - 8.6
FH:-----------------3.5 -----1.5 - 12.4 Seems low
DHT:-------------- 43-------No reference provided
DHEA:------------214-----138 - 475
TSH:--------------1.76-----0.45 - 4.5 Seems low
Prolactin:-------- 8.7------4.0-15
Estradiol:---------24.2-----7.6-42.6
IGF-1-------------- 302. ----98-282. High
Progesterone—.2---------0-0.5
SHBG-------------41.2-----16.5-55.9 Seems high

In all seriousness, your labs look decent. They look pretty much like mine, and many other members here where they aren’t obviously deficient in a hormone.

Have your symptoms changed much in the last week since your original post? You’re about 6 weeks out, correct? I hope you feel better, man.

[unfazed95]

Your case is very similar to mine, except I never had any symptoms except the sexual ones. The persisting problems is the not full hardness and quickly loose erections, everything else is good now. But these 2 improving so slow :S fuck this bitch ass medication and the bitch ass professors that made this crap, I could’ve done S better job with this horseshit , I wouldn’t give this to animals tbh

[Mayflower]

@Jaime a Frodo/Fellowship of the ring level of effort on root causing PFS certainly feels like what’s needed.

Correct, 6 weeks without a noticeable change. ED, Low Libido, Anxiety, Indifference, and Insomnia. Hopefully things improve!

Cheers and thank you

[Mayflower]

Just circling back on this to leave a note and provide a data point.

It’s been a little more than 4 months since I’ve stopped and I’m 90% recovered. The only side effects that really remain is that my libido feels 75% of what it was before and erections are a little bit more difficult to maintain/get. If it doesn’t improve from here, I’ll be alright no doubt.

I have lived a pretty stress free life for the past 4 months and lived health. Lots of sleep, healthy food and exercise. I’m certain this has helped.

Progress was slow and incremental. Other than among this community, the literature seems to be binary on recovery from propecia based on the half life. Either you recover in 2 weeks or you’ve got PFS. Given the slow onset of symptoms for a lot of users such as myself, it makes sense that it takes time to recover. Whatever is happening, it seems to be an accumulated effect (for some) so it’ll take time to reset.

Thanks again for the help and support and cheers

[nw0ordeath]

Thanks for updating, I think you will get to 100% soon enough man, so don’t stress it.

[Wegotyou]

I saw your recent progress update in a new post. My introduction was similar to yours so looks like we are in the same boat unfortunately but I am earlier on in my journey, 8 weeks since quitting fin… I’m new to the forum but can be available for emotional support.

[Mayflower]

The short summary of how I’ve gone:

The Crash (2 months)

• Crashed. Brain fog. Really bad sexual sides.
• Blood hormones seemed to be heading low in the 2 months from when I crashed
• Started Clomid/Anastrazole in January of 2020 (dosage on the chart)

On Clomid/Anastrazole (10 months)

• Felt improved for quite a while
• Blood test at the 4 month mark showed very high T and very high E (not good)
• Reduced the clomid dose and increased for AI dose and went about my life. Can’t really say I was “good” during this period but was living life but had energy. I dated. Had trouble sometimes but made it work.
• I didn’t have a job during this time period and was living a stress free and healthy life
• E came back high after a test despite the change in dose. Had a chat with the doctor who advised me to go daily on the 1mg of Anastrazole. I felt uncomfortable with this given what I had read on this forum and stopped treatment entirely to let my body reset.

Off Clomid/Anaztrazole ( 8 months until present)

• T dipped very low then came back in range. 4 months after stopping, my T was 700+. At this point, I was living my best life. Friends, sunshine, etc. I thought I might be fixed and felt good symptoms wise.
• Since then, T has been gradually tapering off which is alarming to me. Symptoms creeping up.
• I am now working and more stressed which may play a role but that is unclear. I don’t think stress alone should be able to drive you from the top to the bottom of the range.
• My symptoms (sexual sides) are currently high once more.

Now I’m contemplating what next steps I take.

• Option1 - Do nothing medical - hope that nature heals itself
• Option2a - Try therapy again - low dose clomid only (low risk, no AI)
• Option2b - Try therapy again - clomid/anastrazole but with perhaps a different mix
• Option2c - Try therapy again - clomid but try letrozole (different AI)
• Option2d - Try therapy again but with AI only. My body responds like very well to clomid. Not so much to AIs. Perhaps by reducing my E alone will cause my body to create T and I’ll get a better ratio

If anyone has any thoughts based on my bloods I’d love to hear them.

Overall, I’m inclined to ride Option1 until I stabilize somewhere. No reason to kick the system until I know where I end up. Until then it sucks. I started a good relationship while I was feeling good in ~March. Now I don’t want the relationship anymore because I’ve lost the “color” in my life probably from my sinking T.

@Wegotyou cheers man. I did indeed feel better around March/April of 2020 but that was early days in getting started on Clomid/Anastrazole. The third blood test in my tracker I’m attaching. I’m sorry to hear that you are new to this. If you want to chat feel free to DM me.

[baitongWu]

so，besides sex problem，did you have other trouble？

[Mayflower]

Hi there friends.

It’s been a while since I’ve posted but I wanted to write in an update. Mostly because things have been going reasonably well and I’m sure there are a few other that would benefit from a message of positivity.

Current Status:

• Overall, my symptoms are relatively low. With time everything has gotten a little bit better, millimeter by millimeter. My highs are 95% an my lows are 80%.
• I’m able to regularly be intimate without the regular use of PDEs (Cialis)
• With that being said, I do use a low 5mg Cialis dose every once in a while because, well, it’s fun.
• I do need to wait 2-3 days after being intimate to feel a high degree of libido. I don’t feel that this is negatively impacting my quality of life.
• Sleep is sometimes great and sometimes okay. I feel that its manageable and its not clear to me if this is PFS related or just a result of having bad sleep habits.
• Since my last post, I used a small amount of clomid/AIs sometime in 2021 but ultimately didn’t stick with it. My T would read quite low but I feel fine so I’m not concerned with it.
• Overall, I don’t feel like my life is being negatively impacted by whatever symptoms I have left.

Contrasting this to where I have been, I feel like I’m pretty gracious with where I am. It’s a combination a little bit of acceptance with a little bit of improvement but the result is at least being content.

Observations (so far)

Messing with blood hormones brought me no salvation
It’s been said on this forum quite a bit but I (like many others before and many others in the future) learned for myself that messing with blood hormones wasn’t going to get to the root cause of PFS symptoms. Both times I started clomid, I felt short term gains that ultimately wained. In both cases I took clomid with an AI (hormone danger-zone). I regret that. Luckily I don’t feel like I suffered any consequences… but I did take an unnecessary risk with nothing really to show for it. If you really want to try to address a hormone issue, perhaps try a very low dose of clomid where an AI may not be needed.

Being open with your SO helps
I’ve had two girlfriends in this time period whom I’ve been candid with. In both cases I thought it really helped. Especially in my case where a longer period between being intimate helps with feelings of libido. Upfront before anything was serious, I just explained that I had a longer refractory period without providing details. All have been very understanding . Eventually I explained why and it was all chill. The result was a cadence of intimacy that worked for me which I didn’t need to stress over. Highly recommend.

Other Observations

• I haven’t really done anything other than live reasonably healthy. I eat healthy but not any specific diet. I workout a medium amount. I have gotten into surfing which I’ve found to be incredibly beneficial for my mental state. I suck at it but still love it.

So overall, I feel okay right now. It’s totally possible that could all change tomorrow…it’s likely that I’ll be worse than I am right now at some point… but right now I feel like I’m on a track to get progressively better with time…but even if I don’t, I’m at least content with my state as is.

I hope this message helps someone who’s looking for a message of hope. Stick with it friends.