My PFS story, didn't know this could happen to a person

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 search

What is your current age, height, weight?

35, 5’11’’, 170lbs

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.)?

1mg/week

What condition was being treated with the drug?

Hair thinning

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

2 months

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

34

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

34

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

Cold turkey

How long into your usage did you notice the onset of side effects?

1 month

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

low labido, ED, anxiety and depression

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 (recovered)
[ X] Watery Ejaculate
[ X] Reduced Ejaculate
[ ] Inability or Difficulty to Ejaculate / Orgasm
[ ] Reduced Sperm Count / Motility

Mental
[ ] Emotional Blunting / Emotionally Flat
[ ] Difficulty Focusing / Concentrating
[ ] Confusion
[ ] Memory Loss / Forgetfulness
[ ] Stumbling over Words / Losing Train of Thought
[ ] Slurring of Speech
[ ] 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
[ ] Testicular Pain
[ X] Testicular Shrinkage / Loss of Fullness
[ X] 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
[ ] Lowered body temperature

[ ] Other (please explain)

What (if any) treatments have you undertaken to recover from your side effects since discontinuation of the drug?

SSRIs

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)?

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.

So about a year ago I signed up for Keeps. They sent me minoxodil and finasteride. I looked up the finasteride and said I didn’t want to mess with it. But one year later October 2020, i had a moment of bad judgement and decided to take my first pill. My plan was to just take 1/week and stop if i felt any side effects. No noticeable side effects occurred until early December, I got a headache like i never felt before, it was a very dull sort of nautiossness from the middle of my head, It was probably my hypothalamus starting to go effing crazy from the rollercoaster I was putting it through with the 5-alpha reductase inhibitors once a week. But no other side effects other than some depression starting to creep in.

I quit the drug on December 18 2020, and by new years I felt better, the headache was gone. But the next day it started to come back and the next two weeks led up to the crash I had on the 13th of January, 2021 which included anxiety - depression - ED - loss of labido. The last 2 months have been terrible. The ED and labido have improved slightly but the depression and anxiety have gotten worse. I am trying to keep hope that I will improve but it’s really hard right now.

#2

sorry to hear your story! the light progress in libido and ED is a great news itself!
Hows your energy? You dont suffer from chronic fatigue?

#3

no, i have too much energy if anything, don’t know where to put it since all of my former outlets don’t give me much pleasure anymore

#4

You should definately go for a walk every day and go to weight lifting or HIIT 2-3 times a week. It might help you imrpoving further sides.

#5

I read your bio - you’re a year out? what % would you say you’ve recovered?

#6

yeah, well I’m sorry i cant be too encouraging, because at this point I’m pretty much suffering from the very same sides since the crash. I would say the only sides have improved is insomnia which is completely recovered, and that I dont have a constant 24/7 anxiety and depression, now I’m capable of continue my business.
Yet I have sides that got worse, and such is chronic fatigue and ED. I keep believe though that it can improve in long-term if I could continue regulalry weight lifting.

#7

So I had my first wave of recovery two nights ago. I felt almost normal for the entire evening. Had some excitement feelings about life, and just felt relaxed. I was able to stay up late … I usually just want to go to bed as soon as possible because of my depression. I’m not sure what caused this. I started taking pregnenolone that day. I also had a very relaxing meditation session in my car that afternoon. Who knows … but now im back to depressed anxious pfs baseline. But from what I hear recovery comes in waves like that, and many people say that they start to last longer and become more frequent, so hopefully that is the case with me.

#8

Update -

Symptoms - low libido, ED, anxiety, depression

Supplements (randomly cycle these)- preganolone, tribulus, l carnatine, ashwagonda, gaba, DHEA, chlorella, vitamin D, creatine, maca

Meds - vibryyd (a newish ssri), seroquel ( for sleep), gabapentin (anxiety), hydroxyzine (anxiety)

Status- have had a couple brief periods of remission this week from the anxiety/depression.

#9

Hi @fearsomepigeon

I’m sorry to hear your story, but I’m glad you’ve had some improvements. Please be careful when self-experimenting with supplements as some patients have become considerably worse.

I’d keep giving it time to see how much you improve. However, after the three-month mark, could you please do us a massive favour and complete our patient survey? There’s a link at the top of the forum that explains what to do.

All the best,
Mitch

#10

done. i unfortuanately passed the three month mark last week :frowning:

#11

Thank you. Please keep the faith - things can and usually do get somewhat better over time. We’re all working very hard to solve this and I’d encourage you to read our latest threads about research, our upcoming video podcast, and our new Family Advocacy Group.

#12

Update: I saw an endocrinologist and she checked hormones everything was in range. The only pre fin data I have to compare is TSH I have had my tsh tested multiple times in my live because I have had a fast resting heartrate - especially at the doctor’s - and it has been around 0.6 consistently … now, post finasteride it is 1.08, this is a decrease in my baseline for tsh and I’d bet my life it was caused by fin,/post fin. I have notice that my heartrate is lower than usual too which could be caused by my change in thyroid activity. Since this is the only objective data I can point to should I try to get her to prescribe me something ? I doubt shed be willing to because it is still in range … I think as a group we have to grasp on to whatever biomarker we can find and try to treat it … instead of getting in the weeds so much and complicated theories that can’t be proven or help with engaging a doctor.

#13

Has anyone dealt with less sensitive testicles? I am really upset with this symptom … it feels so weird. I’ve had this since the beginning (3 months) pretty much. It seems alot of people complain of pain in testicles, I wish I had that, not feeling anything is is worse I think.

#14

I hate writing this because I know no one likes reading sad posts about this syndrome, because it makes others lose hope too, but as Aragorn says in the Two Towers, ‘there is always hope’ … so I hope I don’t bring you down too much. I have reached month 4 since discontinuation of finasteride and there is no improvement of my symptoms. I think the first step to recovery is being able to improve anxiety and depression and I have had no success so far. It seems every thought that comes into my head starts a train of thoughts that lead to me thinking about taking finasteride and developing this syndrome.

For example I am working on cognitive behavioral therapy, which basically involves avoiding triggers that give you negative feelings by changing thoughts and behaviors and eventually changing feelings. But it’s hard to avoid triggers when everything in the world and every memory I have before finasteride is a trigger. Why? Because it’s a constant reminder of how I used to feel before finasteride. I can’t think about a past time when I felt happy (which is one of the methods therapists suggest) because I know that If I could repeat that experience I wouldn’t enjoy it like I did back then. I think that if my body could take the first step and give me a day of partial remission I might be able to use that going forward, but unfortunately, I have had no full days of partial remission, just a few evenings that were likely related to supplements I tried.

From the recovery or partial recovery stories I’ve read people usually experience a remission for atleast a day in the first 3 months post-fin. And then they can use that as motivation to keep pressing forward and improve the debilitating anxiety and depression, and once that’s dealt with dealing with physical symptoms probably comes so much easier, in that it becomes easier to follow a protocol or to make appointments with doctors. Has anyone gotten a full 1-day remission/partial remission for the first time post 4 months?? Until then I’ll keep reminding myself of Aragorns words of inspiration in the Two Towers.

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#15

test results
test results728×434 59.3 KB

Got these results ordered from Dr jacobs. everything is in normal range but he said my bioavailable T and my RT3 are on the low end. he is suggesting armour thyroid and clomid to try to bring them up and see if it helps with my symptoms

1 Like
#16

So it’s been a year and not doing any better. I barely still have my job - I cut down to 32 hours - but the workload is still there and it drives me crazy disappointing people I used to work with. I was (still barely am) an environmental engineer. I used to be able to handle large complex projects by breaking them down into little bits and completing each bit one at a time, doing that used to give me a hit of dopamine or whatever each time i completed a minitask that drove me to take on the the next mini-task - that mechanism is completely gone now, there is no task-reward process in my body/brain anymore its just going through the motions for survival and then contemplating suicide every hour of the day. As with many severe sufferers sexual function is an afterthought — but yes things are still close to dead down there. My testicles are almost numb - like you know when you see someone get kicked in the groin - most every guy cringes because they know how much that hurts, but not me anymore - my testicles are just another part of my body … they can feel pain but not the special kind of pain reserved for fully functional guys. Not having ‘balls’ (in the euphimistic sort of way) is one of the main problems with this disease and why it doesn’t get more attention. I don’t have the ‘balls’ to kill myself. I don’t have the ‘balls’ to speak out publicly about this condition. I don’t have the balls to follow a consistent diet and exercise routine. I don’t have the balls to accept I have this syndrome and move forward. My goals is like @Sugarhouse says … to get to as stable as possible with this syndrome so that I can contribute constructively to the community. How do all find a way to ‘grow a pair’ and make something happen - the problem is that’s the very problem we’re dealing with.

2 Likes
#17

Ugh and this is the path I’m on, the no task-reward phase has kicked in and there’s only one way out.

didn’t know this could happen to a person
Me neither…and yet it’s been known for decades.

#18

Are you still taking the ssris? They can also cause the side effects you are dealing with right now. Also, check your prolactin just for the peace of mind. If it will be normal then pfs most likely. Your testosterone values are very good from what is seems.

#19

So sick of people telling me to make a list each day of things to accomplish … yes this is something I used to do pre-finasteride, I remember the feeling of slight reward when I got to cross something off a to-do list … this is just not possible with PFS lists are as pointless as my dick

#20

right now I’m taking wellbutrin, gabapentin, and seroquel. Im seeing a psichiatrist that has dealt with PFS and he said this combo worked for one of his patients