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 searching for something along the lines of “dutasteride vision problems” when I first crashed.
What is your current age, height, weight?
30, 6’1”, 200lbs
What specific drug did you use (finasteride, dutasteride, saw palmetto, isotretinoin/Accutane, fluoxetine, sertraline, citalopram, leuprorelin, etc…)?
Finasteride (started on propecia, switched to generic a year in when made available) dutasteride (generic avodart).
What dose did you take (eg. 1 mg/day, 1 mg every other day etc.)?
Fin = ~1.25mg daily, 5mg pill cut into fifths.
Dut = 0.5mg daily
What condition was being treated with the drug?MPB
For how long did you take the drug (weeks/months/years)?
Fin = roughly 9.5 years
Dut = 32 days
Date when you started the drug?
Fin = around April 2013
Dut = around August 22nd 2022
Date when you quit the drug?
September 24th, 2022.
Took Fin again between Sept. 1st - Sept. 3rd 2023 (Regrettably - was gaslit by doctors and convinced to try it again).
Age when you quit?
Initial crash at 28, almost 29.
Dabbled again and got burnt at 29, almost 30.
Currently 30.
How did you quit (cold turkey or taper off)?
Cold Turkey.
How long into your usage did you notice the onset of side effects?
When starting FIN, the typical stuff like ball ache, nipple pain and watery ejaculate I noticed almost immediately, but I was informed of that as a normal temporary side effect so I wasn’t concerned. That stopped a week or so after starting FIN. In retrospect, I think the cracks were beginning to show while on Finasteride all those years. About two years into taking FIN, my prescription ran out and I missed taking it for a few days. During that short time off I developed breast pain and a small lump under my left nipple that you could feel, but not see. I was worried, but got back on the med and it didn’t get any worse. Figured it was a small price to pay for my hair. When I started DUT, I again experienced the ball/nipple pain/ejaculate stuff and knew it was par for the course and trusted the process, not phased by it. My teeth started to hit each other while talking in the week or two leading up to my crash, but would have never associated that with the DUT and didn’t pay it much attention. I also had oily skin near my eyelids and experienced an incident where I was “seeing stars” momentarily against a white wall in my bathroom, again, never even thinking it could be the hair meds and chalking it up to stress, or not worrying about it all.
What side effects did you experience that have yet to resolve since discontinuation?
Vision problems, metabolic issues, dental issues, skin changes, hair loss, pretty much everything that hit me has stuck. The puffy nips, nipple pain and testicular pain I had at the onset of my crash resolved after several months. My sensitivity to light and screens somewhat improved. My teeth and skin got bad real fast, but seem to have hit a point of “stability”.
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
[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
[x ] Lack of Motivation / Feeling Passive / Complacency
[ ] Extreme Anxiety / Panic Attacks
[ ] Severe Depression / Melancholy
[x ] 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
[x ] Gynecomastia (male breasts)
[ ] Muscle Wastage
[ ] Muscle Weakness
[x ] Joint Pain
[xxx ] Dry / Dark Circles under eyes
Misc
[ ] Prostate pain
[ ] Persistent Fatigue / Exhaustion
[ ] Stomach Pains / Digestion Problems
[ ] Constipation / “Poo Pellets”
[xxx ] 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
[ xxx] Other (please explain)
Photophobia, Visual Snow Syndrome, Black Floaters, Afterimages, Meibomian Gland Dysfunction, Bulging Veins in Eyes, Sore Teeth, Bite Misalignment, Open Bite, Yellowing Teeth, Oral Thrush, Tooth Mobility, Cracked/Chipped Teeth, Dry Skin, Oily Skin, Acne, Sudden outbreak of Moles, Freckles, Angiomas, Melasma, Sunken In Facial Appearance, Lower Leg Hair Loss, Eyebrow Loss, Sore Joints (Wrist and Neck), Sore Sternum Area, Elevated Bilirubin, Insulin Resistance, High Blood Sugars, Sleep Issues.
What (if any) treatments have you undertaken to recover from your side effects since discontinuation of the drug?
Dozens of medical consultations, exams and blood tests, fish oils, vitamins and supplements, cyclosporine eye drops, preservative free eye drops.
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)?
No pre-PFS blood work (of course), but tons post-PFS. All mostly in range aside from high bilirubin. Will update the post later with this info.
Anything not listed in the above questions you’d like to share about your experience?
Thank you to everyone who shares their story and fights for this cause. You all help me feel that I am not alone.
Tell us your story, in your own words, about your usage and side effects experienced while on/off the drug.
I’ll try to keep this neat, I suffer from many symptoms.
TLDR: Took FIN 9 years, switched to DUT. Abrupt mid-day crash on 9/24/22 after 1 month of DUT starting with vision problems, leading to dental issues, skin changes, eyebrow loss and many other physical symptoms. I do not present with some of the more typical PFS symptoms such as the libido, memory, emotionless stuff, etc.
Took FIN for 9 years (age 19 - 28), and switched to DUT as I noticed the hair gains slowly wearing off. Took 32 pills of DUT over a period of 32 days. Crashed in the middle of the evening (9/24/22) while sitting on my couch starting with sudden vision changes (blurry vision, severe photophobia, black floaters, visual snow, dry eyes). Was fine that day and had perfect vision my entire life before then - never the same again. Now I struggle with severe dry eye disease, and visual snow syndrome, cannot look at screens unless I wear tinted FL-41 glasses, and only feel comfortable using my iPhone at about 15% brightness. During the initial days of my crash, the light sensitivity was so severe that I could not stand to be in the same room as any TV screens. Nor could I sit near anyone using their phone. I could lay in a dark room under a blanket with my eyes shut and still feel the image of whatever I was previously looking at being burnt into the back of my eyes, the sensation of pain similar to staring at the sun.
During the initial days of my crash, I woke up to all my teeth being sore. All of them were chipped, and scraped, with hairline cracks on the surface. My bite had shifted and my gums had seemingly become thinner. My teeth just suddenly no longer aligned or fit together the way they used to. Over time they continued to lose whiteness and turn a dull yellowish color, seemingly lacking enamel. Every day since my crash in 2022 my teeth and gums have had a persistent dull ache similar to what it feels like when you have orthodontic braces tightened. My teeth also feel loose in my mouth randomly at times. I now have to be careful talking and chewing or my teeth will hit each other. I developed what a dentist referred to as an “open bite”. I religiously have to wear a plastic mouthguard to sleep every night or my teeth will grind. I had perfect straight teeth with no cavities or any sort of defect before my crash.
About 2-3 weeks following my crash, I began to rapidly and seemingly overnight develop dozens of unflattering growths and changes to the texture of my skin. Freckles, moles, red dots, angiomas, melasma, etc. exploded across my body. Mainly affecting my back, neck, shoulders, torso, hands, and sides of my face. Before my crash, I had near-perfect young-looking skin with about 5 or 6 birthmarks, etc. Now I am covered. A dermatologist I saw days before my crash noted how healthy and clear my skin was, remarking how “little sun exposure/damage my skin had”. Upon making another appointment two months after crashing, that same dermatologist referred to these skin changes as “sun spots” and suggested I wear sunscreen. I live in a cold place, it was Fall, and I had spent zero time outside. For the most part, that mind-numbing interaction sums up my general experience trying to get any medical help or recognition for this shit and what it has done to my body.
I’ll stop there for now, that’s just the tip of the iceberg chronicling some of the more prominent symptoms out of the dozens that I have.
Some typical PFS symptoms I do not have are muscle wastage, lack of emotion, cognitive issues, shrinkage, ED, numbness, or libido problems. None of that for me so far, I am praying it stays that way.
The gradual loss of my eyebrows over these past couple of months is the newest and most emotionally devastating symptom that I am now dealing with. Not sure how much longer I can keep this up, but I won’t go down without a fight for awareness and justice. I had an amazing life before this and was on the verge of achieving a lifelong dream I had sacrificed so much for and worked so hard at. I was going to be somebody I was proud of. Devastating for it to all be taken away by unlisted permanent side effects of a drug that I was ironically taking to feel BETTER about myself and improve my image. Now my confidence, physical appearance, health, hair, career, and personal relationships are irreparably destroyed. I can’t wrap my fucking head around it.
Self-reporting template - ONLY USE FOR FUTURE POSTS TO REPORT ANY TRIALS OF TREATMENTS, NOT YOUR INITIAL MEMBER STORY
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Name of the therapy/substance:
- Dosage:
- How often you took it:
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Status
- Still using [ ]
- Stopped with no lasting change to initial symptoms [ ]
- Stopped with persistent change to symptoms [ ]
- Duration of use: Days [ ] Months [ ] Years [ ]
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Response when you started:
- Greatly improved [ ]
- Slightly improved [ ]
- Stayed the same [ ]
- Slightly worsened [ ]
- Greatly worsened [ ]
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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 [ ]
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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 [ ]