My history PFS!

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

What is your current age, height, weight? 31, 1,75, 79kg

What specific drug did you use (finasteride, dutasteride, saw palmetto, isotretinoin/Accutane, fluoxetine, sertraline, citalopram, leuprorelin, etc…)?finasteride, dutasteride e saw palmeto

What dose did you take (eg. 1 mg/day, 1 mg every other day etc.)?1mg fin, 0,5dutasterida,

What condition was being treated with the drug?hair loss

For how long did you take the drug (weeks/months/years)? 7 years

Date when you started the drug?2015

Date when you quit the drug? 2022

Age when you quit? 31

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

How long into your usage did you notice the onset of side effects? 5years

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
[/] 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
[ ] 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
[ ] Extreme Anxiety / Panic Attacks
[ ] Severe Depression / Melancholy
[ ] Suicidal Thoughts

Physical
[ ] Penile Tissue Changes (narrowing, shrinkage, wrinkled)
[ ] Penis curvature / rotation on axis
[ ] Testicular Pain
[ ] Testicular Shrinkage / Loss of Fullness
[ ] 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) skin tenderness, feeling of chills, body heat, heart pain, my heart feels weak

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)? the last blood test was on 16/09/2022, my endocrine asked for a lot of tests. What were abnormal were estradiol which gave RESULT… 21.20 pg/mL
Men: 41 - 91.9 pg/mL
PREVIOUS RESULTS: 02/25/2022 - 11.20 pg/mL

My DHT has gone down over time, since I was using the substances, I took several tests over the years: from 701 it went to RESULT… 391 pg/mL 16/09/2022 Men (20 - 89 years old) ): 143 to 842 pg/mL

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 used finasteride for hair loss, but very irregularly at first.
I had a hair transplant in 2019 and I used a topic that had finasteride and dutasteride, until then I felt unwell, because of that I went back to tablet finasteride, the indisposition continued. I went for the pill dutasteride, I didn’t adapt because I got pimples and indisposition, I went back to the topic. In all these medication returns I had an improvement of the indisposition and then it got worse. The doctor gave me Saw Palmetto, I didn’t adapt either. I decided to stop everything should have 1 month and a half. I had a crash on August 27th and since then all these symptoms started. What is bothering me the most is my heart that seems to be without strength and my body that is weak at many times. PS: I’ve always been at the gym with weight and now I’m having a hard time

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 [ ]
1 Like

Hey Henrique, thanks for sharing your story with us and creating a member story.

I’m sorry to hear you’ve been going through this.

It sounds like you quit the drugs not too long ago, so I would recommend to give it a few months (at least three) to see if your side effects go away naturally. If it has only been a few weeks then I think there’s a good chance you’ll still see some improvements.

I would recommend to avoid any 5-alpha-reductase inhibitor after a bad experience with one. Based on a lot of patient anecdotes, when people experience adverse reactions to one type of 5-alpha-reductase inhibitor, adding or replacing it with another one (in your case saw palmetto after dutasteride) has serious potential to worsen the symptoms.

If you haven’t done so yet, it would be of great help to the community if you report your side effects to a pharmacovigilance agency in your area.

Hope your situation will improve with time.

1 Like

What I’m finding worse is weakness and indisposition. I always went to the gym with a lot of weight and after the crash, I’m another person, I wake up tired. What do you feel? Have you stopped taking the medicine for a long time?! Have you had any symptom improvement over time?

I only took finasteride (1mg daily) for 1 month in 2019. Three years after I quit the drug, I still suffer from libido loss and loss of genital sensation very persistently. Some other symptoms have gotten quite a bit better for me though, probably just with time.

The fatigue and muscle weakness you describe is something a lot of people here mention and also have. For me personally those things are not my main concerns, but I’m pretty sure someone else can chime in and share their experiences with fatigue and muscle changes.

At the moment, we are assuming that ‘PFS’ is quite rare, and that most people who get adverse effects will recover with some time after quitting. I think you only need to start worrying about any of this being permanent if you still suffer from symptoms six months after quitting or something.
Just try to give it some more time and stay hopeful.

Thank you for the words. It must have been two months at the most since I stopped using everything. My fear that I used finasteride, dutasteride and saw palmetto at different times. I’ll wait about 6 months to see how I feel. I inhibit 5AR in ways… that’s my fear. The indisposition I feel is absurd… at times I feel good, then there is a huge weakness.

Moving on to update here, despite the fact that I have been off the drugs for a short time, during the period I used it, I used finasteride, dutasteride and saw palmetto at different times. Today I felt my body quite sore and I was weak most of the time. Yesterday and today were perhaps my worst weaknesses. During my night’s sleep I felt my body warm and my muscles burning sensation. I took the sun during the day and felt a little better, but the rest of the day with weakness and painful sensation in the muscles. It hasn’t been more than 2 months since I stopped all medication, but I’ve been having unpleasant symptoms. I will try to write more often my day to day and see how I evolve. I hope I can make improvements. For now I’m eating healthy and meditating, last week I went to the gym for 5 days, feeling pretty weak, but I went. I no longer felt anxiety or depression. For me, I think of all the symptoms depression is the worst symptom.

Moving on to update my story, I have had nighttime hot flashes interspersed with cold. Moments when I get weak and feel inflamed in my body, skin, muscles and joints. Tingling in the left arm mainly. I stopped training because I don’t have the energy. When I tried to train I had two bad days in a row of very hot nights. The libido issue cannot be measured because I am feeling weak. How can a person with weakness have sexual desire? It’s difficult. I’ve been able to sleep, I’m not depressed or anxious, I’m just sad that I’m like this and I’m not seeing improvement. The feeling I have that after the crash inside my body there is a war going on, an inflammation really. It hasn’t been two months since I stopped.

What I find most curious about my blood test, I was talking to a medical colleague about, is that my free and total testosterone levels are within the reference values ​​and my DHT values ​​have dropped, still remaining within the reference values. , in two years, a consequence of finasteride, dutasteride and saw palmetto, but my estradiol is below the reference values ​​which, theoretically, was not supposed to be happening, because the dht lowering, there is more testosterone left to be transformed into estradiol, which was not seen in my last blood test.

I’ve seen this trend in other PFS sufferers as I’ve been doing extensive reading across many forums.

There is both sides of the coin, people who end up with more estradiol and other who end up with less. This is true for most hormones it seems like.

There’s also a few studies that confirm this variation, I don’t have it at hand currently. But they showed a major individual variation in hormone levels pre/post fin.

The only consistent changes among all studies done to this date is lowered (brain) DHT and DHP IIRC.

Moving on to update my situation today. Two days ago I felt less tingling in my body, especially in my legs and arms. On my last night I had 3 erections and spent the whole day horny. Yesterday afternoon to night I felt like I was healed, feeling of general well being. This morning I woke up with tired legs and ate normally: bread, egg and sliced ​​pineapple. everything’s good. Decided to add powdered milk to see if it made any difference to me: milk does not contain gluten, contains lactose and the label said may contain soy. I took it, 25 min later, I felt two light twinges in my heart, it gave me a slight anxiety and tingling and numbness in my body. I felt a little cold. I lay down for a while and I’m feeling better, but with very slight tingling in my left arm.
Note: I have read that soy contains DIM, as do Broccoli, Kale,
Cauliflower,
Cabbage,
brussels sprouts,
Oil of Primula.
In view of this: I cut powdered milk from my diets, the question remains whether it was the milk or soy in its composition that caused these effects. It is worth mentioning that it has not been 2 months since I stopped using finasteride, dutasteride, saw palmetto and minoxidil, despite being used for a few long years.
I’ll always keep up to date here everything I feel and has to improve or worsen