6 months of progressive symptoms - member story

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)?
US
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?)
Members of a PFS fundraising groupchat
What is your current age, height, weight?
22, 6’3", 170 lbs
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 mg/day
What condition was being treated with the drug?
MPB
For how long did you take the drug (weeks/months/years)?
1 week
Date when you started the drug?
7/22/2022
Date when you quit the drug?
7/29/2022
Age when you quit?
22
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 week
What side effects did you experience that have yet to resolve since discontinuation?
depressive mood swings, anxiety, insomnia, testicular pain, prostate pain, joint pain, tinnitus, muscle spasms
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
[] Loss of Libido / Sex Drive
[ ] Erectile Dysfunction
[ ] Complete Impotence
[ ] Loss of Morning Erections
[ ] Loss of Spontaneous Erections
[ ] Loss of Nocturnal Erections
[ ] Watery Ejaculate
[ ] Reduced Ejaculate
[ ] Inability or Difficulty to Ejaculate / Orgasm
[ ] Reduced Sperm Count / Motility

Mental
[x] 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
[ ] Suicidal Thoughts

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

Misc
[x] Prostate pain
[ ] Persistent Fatigue / Exhaustion
[ ] Stomach Pains / Digestion Problems
[ ] Constipation / “Poo Pellets”
[ ] Vision - Acuity Decrease / Blurriness
[x] Tinnitus (ringing or high pitched sound in ears)
[ ] Hearing loss
[ ] Increased hair loss
[ ] Frequent urination
[ ] Lowered body temperature

[x] Other (please explain)
muscle spasms

What (if any) treatments have you undertaken to recover from your side effects since discontinuation of the drug?
vitamin d, omega 3s, magnesium l-threonate, vitamin b12
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)?
T, DHT, LH, FSH, estradiol, all normal post-fin.
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.
Before July 2022, I was a healthy and happy young man. I have lots of good friends, a loving family, I study at an amazing institution, have a job I love, and I’ve always valued well-being, meditating and exercising frequently. My hair just started to recede over the past few years, and I started finasteride to stop it. It just felt like another optimization to me. After a week of finasteride, I noticed testicular pain one morning waiting for a flight. I didn’t think much of it, and moved on with my day. That night, while I was unwinding for the day, my mood suddenly dropped to an absolute rock bottom. I felt like the world was ending. It lasted for hours, and I had no idea what was happening. I had never felt anything like that before. I stopped the finasteride because of the testicular pain, but still didn’t connect the mood issues to the drug. But over the next few months, I experienced absolute hell. I started getting these depressive torturous mood shifts multiple times a day for hours at a time. At one point I started getting anxiety attacks too, which would keep me up all night, jolting me awake as soon as I started to drift off. I developed muscle spasms all over my body, which happen throughout the day. 4 months in, my tinnitus began, and my ears are now constantly ringing. My testicular pain got so bad at one point that I went to the ER – it has remained and is now accompanied by prostate pain as well. Lastly, I’ve developed joint pain over the past few months in my knees, elbows, and ankles. I still experience all of the symptoms, though some of the mood-related ones have shown partial improvement.

My philosophy with this thing after 6 months of hell is that I want science, and science only, to solve this. I understand the urge to self-experiment and self-medicate, but at the end of the day, none of us have doctorates in genomics (at least most of us), nor do we have funding to conduct peer-reviewed high-quality research. This should be our main focus. Some of the folks I know who participated in the recent study said that the scientists are actually quite hopeful we can find a cure. We just need to fund them and raise awareness.
We should be angry about this. We have a debilitating condition and we deserve scientific attention just like everyone else. We shouldn’t hide in the shadows. The fastest and most robust way out of this situation is to get the science going. If you want to try supplements or drugs, go for it, but those don’t work for everyone, and even when they work they aren’t necessarily permanent nor do they cure all the symptoms for everyone. We deserve a cure. This can only happen through science. A mechanism is being uncovered, and we have to push for it. I want it badly, and I hope you do too. I donate to the pfs network monthly. Please let me know if you’d like to join our donation group – it’s a great group of people who all just want to see this disorder eradicated. Despite how horribly fucked up I am, I remain hopeful. We can’t give up because we deserve our lives back.

4 Likes

Hi @intelligent-mall - thank you for sharing the story and welcome to the forum!

It sounds like you’re already up to speed about our current research initiatives - other than that, have you reported the side effects to the FDA? Here’s a link.

And yes, let’s keep working together to bring more resources and attention to this horrible condition!

2 Likes

already reported, thanks!

2 Likes