DontDoDrugs Story

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)?
United States

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?)
Reddit and Google, searched for post finasteride directly as I was somewhat aware of the possibility

What is your current age, height, weight?
29 years old, 5’9", 120lbs

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.)?
0.5mg every day

What condition was being treated with the drug?
Hair loss

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

Date when you started the drug?
End of November 2022

Date when you quit the drug?
Middle to end of April 2023

Age when 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?
4 months

What side effects did you experience that have yet to resolve since discontinuation?
Dry skin, brain fog, ED, low to non existent libido, trouble staying asleep, depression, randomly elevated heart rate, anhedonia, vision issues

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
[X] Loss of Spontaneous Erections
[ ] Loss of Nocturnal Erections
[ ] 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
[ ] Memory Loss / Forgetfulness
[ ] Stumbling over Words / Losing Train of Thought
[ ] Slurring of Speech
[X] Lack 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
[X] Testicular Shrinkage / Loss of Fullness
[X] Genital numbness / sensitivity decrease
[ ] Weight Gain
[ ] Gynecomastia (male breasts)
[ ] Muscle Wastage
[ ] Muscle Weakness
[ ] Joint Pain
[X] Dry / Dark Circles under eyes

Misc
[ ] Prostate pain
[X] Persistent Fatigue / Exhaustion
[X] Stomach Pains / Digestion Problems
[ ] 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)
Dry skin, heart palpitations, sinus arrhythmia

What (if any) treatments have you undertaken to recover from your side effects since discontinuation of the drug?
None, too scared to take a pill again

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)?
Elevated prolactin

Anything not listed in the above questions you’d like to share about your experience?
I wouldn’t wish this upon my worst enemy

Tell us your story, in your own words, about your usage and side effects experienced while on/off the drug.
I initially took a Finasteride spray from ForHims in March 2022, after the first few days I noticed my penis shrank as if it was in cold water. I was confused so I stopped taking it, and everything was normal within a few days. Fast forward to November 2022, I requested a prescription from my dermatologist and immediately made sure to take 0.5 mg because of the initial reaction I had to the spray. I took this for 4 months till I noticed something was wrong. Initially I attributed it to stress from work, but it was from the medication. After stopping in April, I noticed I crashed almost immediately, but rebounded within 2-3 weeks and was able to masturbate 3-4 times in a day on one of those days, then at some point I crashed again and am now supposedly at some PFS baseline. The past two weeks have been incredibly hard for me, though I’ve noticed some improvement in sleep the last two days. It’s very hard for me to ejaculate, and my libido is “there” but pretty much not existent, it’s troubling since I love my partner very much. The skin on my right hand is dry and peeling off in some spots, and the skin on my feet randomly get very dry as well. I also noticed, before attributing into finasteride, that my heart rate would go up to 120-130 randomly while on gentle walks. When I sleep, it also sometimes feels like I never actually slept, and it’s hard to fall asleep. And my brain fog has varied, but it feels like there’s a sheet of foggy acrylic between by brain and my eyes and it’s hard to concentrate, in addition to my vision feeling “off” almost like I can’t focus on objects.

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 [ ]
3 Likes
#2

Welcome to the forum, @DontDoDrugs!

Sorry to hear that you’re going through this.

#3

Sorry to hear you’re having to go through this torture. I hope you are able to stabilize and improve in the coming months.

#4

You don’t have Tinnitus? a high pitch sound in your ears?

#5

I do vaguely but it’s not really that bad. I used to have it even before finasteride, for years, but it turned out to be caused by earwax, and after getting it removed it went from really loud to almost non existent ringing.

I have it now but it’s not really too bad compared to what it was years ago.

#6

Update: I went to a concert on Friday, loud music EDM type stuff. My heart rate during the concert hit about 135-140BPM peak during the concert while I was just mostly standing still. I attributed this to the heat and me moving around, which it could have been I guess. I couldn’t feel the tightness in my chest since the bass was thumping, and I couldn’t even feel my heartbeat. That night I only had a small sip of alcohol, and a lot of water.

Though the following day, my heart rate under no circumstances would drop below 100bpm, and my chest felt tight or with a lot of pressure. I didn’t sleep much the prior day since the concert let out at around 3 AM, and I woke up many times during the night with a heart rate of about 120bpm. It also felt like half of my chest was filled with air, and I couldn’t get a full breath in. Overall I’d probably slept around 3-4 hours total that night. Since the discomfort didn’t stop despite not necessarily feeling anxious, even after taking deep breaths which normally lowers my heart rate, I went to the urgicare nearby, and they hooked me up to an ECG, where they said I now have a sinus arrhythmia.

Thankfully, I got a lot of sleep and I’m noticing that my resting heart rate has gone from ~100bpm to ~80bpm. Though if I get up from my chair to go walk around, my heart rate will spike to around 100bpm.

I’m wondering if the stimulation from the concert shocked my heart into a weird state? Combined with my already prevalent insomnia, and lack of sleep from that night, it may have just done me in. I’m going to a cardiologist to get things checked out further. Going to try and avoid taking any medications (other than my klonopin for anxiety / sleep) and ride it out in the hopes that this won’t occur again.

Thankfully, my prolactin levels are now within range. They have dropped from 35, to somewhere into the 20’s, down to 11. It also is much easier for my eyes to focus on objects now, meanwhile my eyes almost felt “shaky” and like I couldn’t focus on things.

Some weird thing I’ve also noticed prior to this even, is that caffeine now has the opposite effect. Caffeine lowers my heartrate, meanwhile previously it probably brought it close to the 100-110bpm range if I had to guess. I also no longer get much of a stimulatory effect from it anymore. Overall I just try to avoid drinking any.

Also of note, I’ve been having some stomach issues, and developed balanitis (probably a yeast infection). Avoiding using any topicals as I’ve heard that they are 5ar blockers. I’ve also been taking probiotics to help counter the stomach issues under the assumption that my gut bacteria is thrown off.

Additional supplements I’m now taking (no longer taking multivitamin just in case):

  • Magnesium Glycinate 240mg
  • Omega 3 oil
  • Vitamin D3

I may raise Magnesium to help with the arrhythmia. Will update my original post with any new symptoms that have appeared.

1 Like
#7

Gut bacteria is definitely off. My stomach has been feeling strange, and getting a bloating sensation after eating. I suspect something to do with candida, since I have an active yeast infection and there’s a weird smell coming from my posterior after I wipe. I’ve never had this issue prior to PFS.

Doctor gave me Nystatin topical for my front side, but I’m using it for my backside as well since I’m fairly certain there’s some fungal infection going on there now as well.

Tackling the problem in a similar fashion now to IHP; I will fast for a few days (and 3-5 as opposed to 10) with water, and then switch my diet to yogurt, then veggies and chicken while taking more prebiotics and probiotics and digestive enzymes. May see if the doctor would be okay with a Nystatin tablet prescription as well on my follow up visit soon.

Edit: I forgot to mention that my heart issues seem to be better now. Strangely my resting heart rate seems to be in the 60-70 range now as opposed to the 70-80 range, and it’s hard for me to get a full breath in. The cardiologist also said there was nothing wrong with my heart (I’m not surprised). With more and more time, my heart becomes less sensitive to my movement (it would jump from 70 bpm to 120bpm just from standing up and sitting down). I’ll definitely still be avoiding caffeine.

#8

I have this too - what do you think helped?

#9

I think this was completely related to my prolactin levels. I didn’t change anything, other than maybe trying to eat slightly healthier, and not eating as much.

My prolactin levels went from 35 down to 11, but I haven’t had them tested again since they’re now in range and I figure they will keep going down.

From what I’ve read, prolactin levels are correlated to dopamine: higher dopamine in the brain means less prolactin, and lower dopamine means higher prolactin. Make sure you’re getting plenty of activity, weight training would be good, or even just a hike a few times a week to keep your body moving.

Most importantly, keep a positive outlook on things. It helps tremendously.

1 Like
#10

Quick update, I’m pretty stable mentally right now, even after masturbation yesterday (neat!), other than a bit of brain fog. It’s a tad hard to focus and stay focused, or care about my work, though my job is also kind of boring so that could be part of it. No crash though. I also plan on starting exercising / weight training 3 times a week, 45 mins on those days, either today or tomorrow.

I’ve been on a strict keto diet. Right now I’ve been mostly eating chicken, greens (kale, baby spinach, salad mix). God I crave sugar so badly it’s crazy.

I’d also like to start intermittent fasting, I’m going to go for 12 PM to 8 PM (which means you only eat food during this time period and not outside of it). I pretty much already did this before PFS since I’m a skinny mofo and never really craved food before.

I’m avoiding Cheese, and any kind of Sugar because of my active yeast infection. It is slowly getting better and improving which I’m highly thankful for. Once it’s gone, I’ll wait a week or two then slowly introduce delicious things like cheese and yogurt, maybe a teeny bit of sugar (aside from the small amount of berries I eat).

Based on previous recovery stories, I’ve been integrating the following into my diet which should be safe (all organic, when possible). If you see something I probably shouldn’t be eating, please let me know:

  • Eggs (I cook them in a pan with small amount of olive oil, scrambled)
  • Chicken
  • Baby Spinach
  • Kale
  • Spring Mix salad
  • Garlic (supposedly very good for you, use it a lot)
  • Butter lettuce
  • Onion (any kind)
  • Quinoa (still have not made yet)
  • Asparagus
  • Small handful of berries (raspberries, blueberries)

I’m also integrating the following, which may or may not be safe (based on what I’ve read, and need to be careful):

  • Avocados / Guac with Lime (I’d like to avoid these due to 5ar inhibition, but I’m very lightweight already, so I have them 2-3 times a week instead to make sure I get good fats / nutrients)
  • Flax Seed (apparently high in estrogen I just learned, will be stopping this; was using as fiber / prebiotic)
  • Grape tomatoes (apparently tomatoes are no good, so I plan on dropping these once mine are finished)
  • Red and Yellow bell peppers (I seemed okay? Not sure, will have them in small amounts)

I also ordered these probiotics, and I’m doing the 5 pills morning/night for 5 days, then 1 pill in morning/night until finished. I found them from someone’s recovery story though I forgot who it was, and decided against getting the digestive enzymes for the time being to make sure that my body can break the food down. Reasoning for this is that my yeast infection probably stems from my gut, so I’m hoping to balance the good bacteria inside me to eradicate it, along with my healthy diet.

Dr. Ohhira’s Probiotics Professional Formula

I’m taking the following vitamins right now:

  • 1000iu Vitamin D3 (leave 2 days between each dose)
  • Magnesium 120mg, every day
  • Omega-3 oils, every other day

I’ll up the amount of magnesium just to make sure I’m not taking too much of that. I’ve heard that Omega-6 oils are no good, and neither are Omega-3 necessarily, so I’ve been sticking to Omega-3 oils for now and will see how I feel.

I’ve also heard not-so-good things about Vitamin D3 and how many prefer to stick to the sun, but I’m not going to do that right now, so I’ve been taking it every 3 days or so.

Below is a list of potential 5ar inhibitors that I amalgamated from other people’s posts, using OpenAI. Keep in mind that some of these things are probably okay to eat, so I’ve bolded the ones that I’ve personally seen pop up a lot. Keep in mind, I’ve seen many users state that they’ve eaten some of the things in this list to assist in their recovery stories:

Pumpkin Seeds, Avocados and Avocado Oil, Oranges, Beets, Brussels Sprouts, Pomegranates, Carrots, Cauliflower, Cabbage, Bananas, Apples, Peaches, Pears, Cilantro, Coconut / Coconut Oil, Cow Milk, Goat Milk, Buttermilk, Mayonnaise, Low-fat Dairy Products (Yogurt, Cheese, Milk, Cottage Cheese), Watermelon Seeds, Nuts (Pistachios, Macadamia, Almonds, Cashews, Walnuts, Pecans, Hazelnuts, Sesame Seeds), Oils (Vegetable, Canola, Soybean, Flax Seed, Olive Oil), Cacao / Dark Chocolate / Milk Chocolate, Corn / Corn Oil / Tortilla Chips, Margarine, Eggs, Lemon Grass, Butter, Olives / Olive Oil, Peanut Butter / Almond Butter, Bourbon, Tuna, Peas, Kidney Beans, Lentils, Cottonseed Oil, Saw Palmetto, Vitamin B6, Fish Oil (Omega 3 & Omega 6), Lycopene (Tomatoes, Watermelon, Carrots, Mangoes), Pecans, Zinc (Spinach, Kale, Cashews, Wheat Germ, Cooked White Mushrooms), Biotin, Soy, Whole-Wheat Bread, Beans, Caffeine (Tea, Green Tea, Coffee), Nicotine, Alcohol, Sugar, Nettle Root, Fenugreek, Curcumin.

Disclaimer: I am not a doctor, I’m just some guy! But my personal belief on PFS is this: we took a 5ar inhibitor, and it (obviously) seriously fucked us up. I believe that genetically, some of us cannot properly break down this medication in our bodies due to the enzymes in our liver that do not properly break down certain medications. I’ve had many severe reactions to anti-depressants in the past ranging from hypomania and panic attacks, to Parkinson’s-like shaking of my body (which should have been my red flag to not take this sh*t drug), and I attribute these previous reactions to the mutations in those enzymes or sensitivity to 5-HT in my brain (I have a Genecept test from years ago and there are many mutations in different areas).

What’s currently happening, and I think the reason that we see so many recovery stories with water fasting / intermittent fasting, exercise, and dieting, is because the drug is still circulating in our bodies and not being properly filtered by the liver. In my circumstance, and I think many peoples circumstances, it has thrown off the gut biome and caused issues whether or not it’s realized by the person with this illness. It’s known that finasteride, even in very small amounts, can inhibit 5ar very strongly. By staying healthy, our body is naturally cleaning itself and transitioning into a different state that rids itself of the toxins inside of it. I cannot explain why these side effects start to occur weeks or months after discontinuation, though I’ve seen theories ranging from methylation of our DNA, to permanent changes made elsewhere in our bodies. However I think the key to all of this is to act quickly and don’t just sit around waiting to get better. Do something about it, and make changes that you can control. Do experiment with different vitamins, diets, and types of food which might improve your symptoms or even help you to fully recover. Don’t experiment with hormones without first exhausting your options of natural ways to overcome this inhumane disorder, and without the help of a qualified doctor.

2 Likes
#11

So I’ll have to take it easy on my Keto diet as I went from 120 lbs to 113 lbs in about a week. I have a stupid fast metabolism and small appetite, so I need to come up with a way to work around this.

I will however say that I haven’t felt this good mentally in years. I can’t explain it but it’s almost easier for me to work and focus now, though I still get a bit of brain fog every now and then. Unfortunately the depression does still kick in really hard every few days despite my mental clarity. I go on bouts of everything feeling meaningless and not wanting to do much other than lay on my phone.

On another note, caffeine now seems to bring my heart rate up to about 120-130 now, which strangely lasts about 3-4 hours, then it slowly drops back down (rather than doing the opposite of bringing it down and then back up). I’ve been able to get my coffee fix through decaf for now which has been amazing for my taste buds.

#12

I went to the urologist for my yeast infection.

It turns out if my phimosis continues I will likely have to get circumcised, which he already recommended. The skin on my foreskin keeps peeling off and it’s irritated so the skin keeps shrinking.

I’m going to try whatever I can (including stretching) to make sure that I don’t have to do that. I really don’t want to lose it since it helps me maintain whatever sensitivity I already have.

I’ve been up and down lately, and have been doing my best to keep it together, but my downs are getting stronger and more intense. This is so hard.

#13

Quick updates since I don’t want to spend too much time here, for the sake of my own sanity.

I went to a gastroenterologist, infectious disease doctor, and another urologist for my yeast infection. The first two doctors didn’t do anything at all for me. However the urologist (which is aware of PFS) prescribed me a single diflucan / fluconazole, and gave me a clomitrazine steroid topical, both for my yeast infection. The fluconazole may have done something minor to my libido but it’s inconclusive.

Prior to this though, I’ve been slowly improving. Low libido is absolutely without a doubt the worst side effect right now, followed by brain fog and cognitive issues, though I do see minor improvements in both areas. Nonetheless, I’ve been able to have a lot of sex with my partner, even though the libido / sexual excitement is probably about 20% of what it was prior to all of this.

I’ll be going to the same urologist again in December as a follow up. He said he would prescribe me clomid to help with libido if my prolactin is still high, though I don’t think this is the issue since it’s now in range at 11 as of a month or two ago (he didn’t see the test results in the portal for some reason). Keeping positive and taking improvements as they come :slight_smile:

#14

Just to preface, I hope it doesn’t bother anyone that I write this all here. Even with a therapist, it’s hard since I feel like no matter who I talk to outside of these forums can truly understand my mental pain. In some cases I feel like even my own parents don’t take me seriously. I figure writing here also helps those who might be searching and trying to find symptoms that match what they’re going through.

So random update. This seems like it can’t be true, but I get strange improvements that come when I eat crappy food like McDonalds. I can feel the blood flowing back to my groin and “feel” my erections like I did pre-PFS. Very odd and not sure what would cause that, maybe a rush of dopamine that this kind of food would give? Despite this, I am trying my best to avoid sugar (e.g. no soda, no desserts, no unnecessary foods with a ton of sugar in them).

Still also have balanitis and/or yeast infections (?) on and off. Have to keep using Clotrimazole cream with steroid, otherwise it will come back. The tip of my penis also no longer feels moist anymore like pre-PFS; if I touch it, it almost feels like the skin on my arm would. Not sure if this is a form of eczema, psoriasis, or maybe some autoimmune skin disorder, or maybe the receptors on my skin are just dormant.

Thankfully I don’t have any issues sleeping anymore like I did after my first crash. My sleep only seems to get affected when I’m stimulated a lot on any particular day, but again my sleep has never been so badly affected as after my first crash. Staying up late also makes it more likely that I’ll have poor quality sleep.

I have on and off anhedonia, and sometimes lose the ability to feel much of anything, including: sadness, love, happiness, empathy, fear, motivation, etc. The generalized anxiety disorder and social anxiety I’ve had for my entire life and see a therapist for, is pretty much completely gone, though to be honest I wish I could have it back. Sometimes I legitimately feel like if I were to go skydiving, I’d very likely have a straight face on the way down. Anything that would normally trigger an adrenaline response no longer really does, especially that “gut” feeling you get when you’re excited or stimulated (e.g. gambling, playing an exciting / stressful game, etc).

On the other hand, somehow I still have somewhat pleasurable orgasms, despite not having much semen usually. To reach orgasm, I also have to stimulate myself more than pre-PFS otherwise I just straight up won’t get there. Also note that I have had sensitivity issues prior to PFS but PFS seems to have worsened it a bit.

My prostate (which was previously slightly enlarged before PFS as confirmed by my urologist) likely is also no longer enlarged. It no longer “swells” when I feel aroused and I rarely ever leak pre-cum / pre-ejaculate unless I’m being actively sexually stimulated. Previously I used to massage my taint to stimulate my prostate while I would masturbate, which no longer does anything for me whatsoever. As a pansexual male, bottoming during anal sex is almost no longer pleasurable anymore, whereas previously it was probably the most exhilarating experience I could have.

Not really taking any vitamins at the moment because I’m not sure if they’ll crash me. Though before this I was mostly taking daily Omega-3 oil pills, Vitamin D every 3 days, and Magnesium Glycinate once daily.

I should also mention my heart still acts funny. Sometimes my heart rate will spike to 100+ bpm when standing up from my chair, and then it goes back down to resting of 60-65. Prior to PFS my resting heart rate was in the 70’s and 80’s based on what my watch tells me (it’s the same watch, not switched). So yeah my resting heart rate is now in the 60’s, sometimes high 50’s. I also no longer feel the ‘thumping’ in my chest when my heart beats fast. Sexual activity also sometimes doesn’t usually make my heart rate go up much; it either ends up in the 80’s, or it does the opposite pushing it back towards resting heartrate.

Posted all my blood work here as well:
https://forum.propeciahelp.com/t/high-lh-and-low-fsh/57733/6

Till the next time, take care.