Lost my life at only 22 years old

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)?
Brazil
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?
25, 1,73m 73kg
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?
Hair Loss
For how long did you take the drug (weeks/months/years)?
4 weeks
Date when you started the drug?
september 2019
Date when you quit the drug?
october 2019
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?
I’ve start noticing sides in the 3 week mark
What side effects did you experience that have yet to resolve since discontinuation?

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
[x] Watery Ejaculate
[x] Reduced Ejaculate
[ ] Inability or Difficulty to Ejaculate / Orgasm
[ ] Reduced Sperm Count / Motility

Mental
[x] Emotional Blunting / Emotionally Flat
[ ] Difficulty Focusing / Concentrating
[x] Confusion
[x] Memory Loss / Forgetfulness
[x] Stumbling over Words / Losing Train of Thought
[x] Slurring of Speech
[x] 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
[x] Testicular Pain
[x] Testicular Shrinkage / Loss of Fullness
[x] Genital numbness / sensitivity decrease
[x] Weight Gain
[x] Gynecomastia (male breasts)
[x] Muscle Wastage
[x] Muscle Weakness
[x] Joint Pain
[x] Dry / Dark Circles under eyes

Misc
[ ] Prostate pain
[x] Persistent Fatigue / Exhaustion
[x] Stomach Pains / Digestion Problems
[x] Constipation / “Poo Pellets”
[x] 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

[x] Other (please explain)
Heart Pain

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

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 Will do a post in this section in the future.
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.
I would like to start by saying that my cognition and memory was affected and I still have the language barrier, I speak Portuguese, so maybe my text is a little messy and disorganized. I was a jiu jitsu athlete until I was 21, when I was studying engineering. I started taking the medicine at the end of 2019 and at first I noticed that I had a different reaction to the ones they usually have here on the site. It seemed to me that my receptors were hypersensitive, I had increased libido, burning sensations on the skin and on top of the scalp where I lost 80% of my hair, it was literally wiped out in just 4 weeks, I also had genital darkening. At the end of the first box I stopped the medication because the effects were unbearable, but the effects didn’t go away. Months after ceasing I started to have serious health problems and had to have 3 surgeries: removal of the appendix, circumcision due to the development of plasma cell balanitis (Zoon’s balanitis) and removal of a benign cyst on my lower eyelid next to the tear duct . I also had severe panic attacks and extreme anxiety at the time but I never linked it to the medication because I thought it was just the depression that the baldness caused me. So it went on for 2 years, massive hair loss daily, even on the sides (above the ears, at the temples), hair loss on the legs and on the eyebrows. At the end of this year the symptoms changed. I had testicular reduction in addition to an infection on the left side. The libido has gone along with the nocturnal erections and I am also having severe receding gums, stomach problems, eczema, muscle loss all over the body, even in the pelvic area. I’m desperate, I feel like my body is deteriorating like a 70 year old man. I have support from my mother but to see what this disease has done to me and her is devastating.
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

Welcome to the forum @ruinedyoungman ! Thank you for telling your story.

It seems like you’re a pretty serious case. I’m really sorry. And 3 surgeries… Do you think PFS had anything to do with it?

There’s not much to recommend in terms of treatment, but there are still things you can do:

  1. Report your symptoms to the Brazilian medicine regulator
  2. Read about our upcoming research into this condition
  3. Consider donating to our efforts
2 Likes

Hello,

Sorry to read your story @ruinedyoungman like @M_C states you are a serious case, some get away with a few symptoms, a lot are moderate but a few are severe and going off your list and description you’re in the most unfortunate group.

If I can add anything it would be to say that I’ve been in this for over 20 years. For over 2 decades I’ve been a different human being living in an altered state. Id say for the second half of itt things have become really bad

Part of me wishes I wasn’t in this world experiencing this open ended torture, only to see myself deteriorating further with time with next to no support no acknowledgement no nothing.

BUT if someone asked me would I rather have been gone in say 2006 when I had testicular cancer at the hands of this. I’d take a moment and say NO I’d rather still be in the game despite how harrowing this is…

At times I think I’ve have made a positive contribution, carried out a good deed, a kind word or gesture! which would have not happened if i was not here. I have a lot inside me that i still want to share and do. The ability to feel love, happiness and joy being robbed only to be replaced by the constant of the polar opposite, negative emotions and emptiness, No one but we know how this feels. Unbelievable that a drug can do this.

The work that is going on behind the scenes will make a huge difference and will bring both acknowledgement and treatment.within a few years. For me they’re on an equal footing. People need to know what happened.

My underlying message is to hang on mate and keep hope. With hope anything is possible

AND

What once seemed impossible now seems probable and I truly believe a treatment will be like flicking a switch and everything will return… it will be beyond words. Like a miracle.

Keep Faith my friend u were not meant to suffer like this, none of us were. One day u will be back and you’ll be able to hold your mother and feel her love Think of that in your lowest moments. It’s worth putting up with anything to be able to feel those emotions once again. Your amongst friends on here we are the only ones who know what this is like.

One final thing, with this I’ve become tuned into suffering and when i am out I will sometimes go out of my way to speak to people who are disabled, homeless, struggling with life and marginalised. The look of gratitude, the knowing and the effect this has humbles me and at times has me in tears.

WHEN

I get out of this I will emerge as a better person. From the self centred life enjoyer who coasted life’on the hand Iwas dealt to someone who will have learned a great deal from this. I will never take anything for granted and will never walk past anyone in need.

Giving is what makes a difference to others. People don’t forget the selfless acts which are often free. These last a lifetime to the recipients We still have a role in this life no matter how much Merck has damaged us. Try not to hold onto bitterness and hatred it only hurts you, hand over those emotions to God, those who are guilty in this will be judged by him.

God knows our suffering and he’s with us I truly believe this. The greater the suffering the closer .Belief and faith can help.

Hope some of this rambling helps.

Stay strong

Laz

10 Likes

Yes, there was a connection. My body is in a constant state of inflammation. I am desperate.

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Thank you soo much for your words, seriously, thanks for this with all my heart. Now after i realize what I have, it’s been tough days. This week my anxiety is absurd, and my mother is also suffering a lot, but I will be strong for her.

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Wise words @LazarusRy. Even if we can’t enjoy life ourselves right now, we can still strive to bring light and happiness to others.

Also, if we keep focusing on the serious business of fundraising, research, and awareness-building, I think we’ll see a treatment option one day.

2 Likes

The problem the symptons is too strong and fast pace. My body is only skin and bones and fat (only in my torax and organs). I feel muscle spasm everywhere, the pelvic region doesnt have muscle anymore. Ive been eating once daily and the digestive problems stay bad. I feel like food stay in my gut for hours. Also ive been having weird head aches…

I get all of this peristalsis is not working properly, unflamnation in the digestive system, bile ducts, not working, aches, pains, grimacing of the guts, terrible wind, leaky gut, autoimmune system reacting to everything. How do you reduce this, well!! U fast and reduce the stress on the system Eat in a short window, fast for 24 or 48 hours 1nce per week Have a colon cleanse all of this helps but it takes time patience is a virtue that not many sufferers have anymore. So everything is a case of mind over matter. Be objective to yourself it’s very hard. I know I really do.

Sorry to hear all this. Are you only finding out this was caused by finasteride now?

Have you taken any medication/supplements in the last 2 years that could have worsened your condition?

After i got covid things got pretty bad. Like i said before my first symptons was like a Hyper sensitive androgen receptor. When i got covid things changed, i dont know if its related but i felt like the androgen receptor was starting to shut down and i developt a “spermatocele” in the left testicles and i think it have been shrunking since then and i really feel i have hypogodism now. I have a endocrinologist consult next month and i will do a batery of tests.

Great words from @LazarusRy. Your situation is extremely severe and just shows how ruthless this disease can be. The only thing that really gives me hope is the research that is being done. Luckily you’re still young and still have many years left if/when this disease gets figured out. Like Laz said keep your head up brother. The community is here for you.

2 Likes

I remember that in the beginning I also had an increased libido for a while and I remember that especially in warm weather I also had a burning sensation in the upper part of my head. Except I’ve never gone bald, and I’ve only had receding hairline.

My health situation is getting worse my body doesnt have muscle anymore, if a pinch my forearm with my finger is only bones, im scary as fuck i think i will die

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Sending hugs from Florida. I’m really sorry this happened to you. I also wonder how much my whole physiology has been destroyed. I do hope that I keep living. But I understand now why dying would be okay.

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It’s only getting worse… I have caves even in my hands now, when I touch my chest I can only feel bones… I wonder how is my heart now, since it’s also a muscle…

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I’m so sorry @ruinedyoungman I’ve been where you are now for a longtime and it just felt like open ended torture and a continued slide. Despite the exposure and deterioration things may have started, well not may have but actually have started to improve after all of these lost years. Don’t give up EVER… keep hope. Its still very early days …

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Any updates? how is your ED? can you have an erection at all?