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)? Turkey
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 - can’t remember the exact terms I used
What is your current age, height, weight? 29, 180 cm, 62 kg
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.)? ~1mg, only once, topically
What condition was being treated with the drug? Hair loss
For how long did you take the drug (weeks/months/years)? Only one time
Date when you started the drug? 7 May 2021
Date when you quit the drug? 7 May 2021
Age when you quit? 27
How did you quit (cold turkey or taper off)? cold turkey
How long into your usage did you notice the onset of side effects? after a few hours
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 → loss of rigidity
[x] Loss of Spontaneous Erections → loss of rigidity
[x] Loss of Nocturnal Erections → loss of rigidity
[ ] Watery Ejaculate
[ ] Reduced Ejaculate
[ ] Inability or Difficulty to Ejaculate / Orgasm
[ ] Reduced Sperm Count / Motility
Mental
[x] Emotional Blunting / Emotionally Flat
[x] Difficulty Focusing / Concentrating
[ ] Confusion
[x] Memory Loss / Forgetfulness → sometimes
[x] 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 → occasional passive suicidal ideation
Physical
[ ] Penile Tissue Changes (narrowing, shrinkage, wrinkled)
[ ] Penis curvature / rotation on axis
[ ] Testicular Pain
[ ] Testicular Shrinkage / Loss of Fullness
[x] Genital numbness / sensitivity decrease
[ ] Weight Gain
[ ] Gynecomastia (male breasts)
[ ] Muscle Wastage
[x] 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)
What (if any) treatments have you undertaken to recover from your side effects since discontinuation of the drug? lifestyle changes/diet, Omega-3, Vitamins
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)?
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.
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 [ ]
Introduction: I am a doctor and currently work as a clinical microbiology resident. Unfortunately, I have also been suffering from PFS since May 2021. I postponed writing on this forum for a long time. I wanted to volunteer for the new study at Tampere University so this facilitated the registration process for me. I must say it is a relief to finally be able to write here. I was postponing for two reasons: First, I always imagined that I would introduce myself to this community through a concrete scientific contribution to the subject. And second, it’s difficult to continue working as a physician with PFS symptoms. Whenever I have a little bit of free time, I feel an obligation to do research on endocrine disrupting chemicals and epigenetics. Currently, I am halfway through a relatively competitive residency, which is cognitively demanding even for a normal, healthy individual, in my opinion. Furthermore, night shifts and sleep deprivation make the situation even worse. At least I consider myself fortunate to have a few understanding friends and professors around me. Even so, not a single day goes by without thoughts of resignation on my mind. But I believe I can be of more help to myself and our community by continuing to do my job. I hope that in a few years time I will be able to do some scientific work on our case, using the resources of my university. At least an opinion article or maybe a mini-review… Although, I also hope that by then we’ll have found the answer we’re looking for.
My experience: I’ve only used finasteride once, topically (in an attempt to reduce the side effects as indicated in a review I found in Pubmed). I have two main complaints: brain fog and erectile dysfunction. It has been two years and I’m still struggling with the side effects. Although I knew that finasteride could cause some adverse effects, (like any other pharmaceutical) I was unaware that there could be persistent ones that can negatively impact the brain.
On Friday morning, 07.05.2021, I prepared a solution of 0.1% finasteride. Using a spray bottle, I applied it to my scalp about 8 - 10 times (assuming that each puff contains 100 microlitres, I must have been exposed to approximately 1 mg). Because I started keeping a diary soon after, I can tell the exact dates. After just a few hours, I started experiencing a mild brain fog. I felt a slight dullness in my mind. Suspecting it was a side effect of the drug, I washed my hair to remove any remaining residue. I decided not to use finasteride again and to just continue with minoxidil and anti-hairloss shampoo as I had been doing for two years.
It had only been a few weeks since I had passed the exam for specialty training in medicine and I was waiting for the acceptance letter from the university I had applied to. I spent most of that time reading books. Brain fog did not prevent me from reading, but it was definitely an out of the ordinary mental state. Over the course of three days, this mild brain fog persisted. On Monday, 10.05.2021, after applying minoxidil in the morning, I began reading as usual. Suddenly, I experienced a severe feeling of heaviness in my head and reading became impossible for me. (I am aware that acute worsening of symptoms is often referred to as “the crash” among paitents.)
Approximately ten days passed nightmarishly in that terrible state. There has never been a more desperate time in my life. During the same period, I noticed another side effect. There was a significant loss of rigidity in the nocturnal erection.
Towards the end of the second week, my condition improved a bit and plateaued. Unfortunately, I never fully recovered and regained my former mental acuity. Brain fog gets more severe when I try to read at my previous pace or challenge my mind to remember something. As an analogy, I compare this situation to an overheated laboratory device that is no longer able to function for some time. Never before in my life have I experienced any cognitive problems. I’ve never had sexual dysfunction either.
A note about terminology: It would be helpful if there was an exact scientific term to describe neurological symptoms. Because of the unclear terminology, it can be interpreted as a mere psychological complaint, which, in my opinion, is a common assumption among closed-minded and impolite doctors. I encountered terms such as “headaches” and “head pressures”. I think we are all referring to the same symptom here. I prefer another common expression: “brain fog”. It’s an appropriate catch-all term that also covers the cognitive aspect. Additionally, it is a well known phrase in the medical community, especially in the aftermath of the pandemic.
For me, the most distressing feature of PFS is cognitive symptoms. I noticed that there is a tendency in the literature, in media reports and in some patient comments to emphasize depression rather than cognitive dysfunction. In my case, depression is only a secondary consequence of reduced intellectual capacity. Reading, taking notes, and challenging my mind to remember them were all integral parts of my identity. I’m not completely non-functional at the moment but my reading and cognitive abilities are much slower than they used to be. And that certainly takes all the fun out of it, and lowers my motivation significantly. There is a profound decline in the sense of meaning in life when the mind is prevented from reaching its full potential.
In a way, I feel as if I have been deprived of all the pleasures of life. Intimate relationships and sexuality, certain foods and drinks, alcohol, a healthy and fulfilling social life, intellectual enjoyment… I used to really enjoy playing the piano, but now I have no desire at all. In terms of quality of life, PFS is undoubtedly one of the most devastating diseases I have ever seen.
With anguish but also with hope I try to be optimistic about the future. There are still mysteries about the epigenetic machinery of cells that are waiting to be unravelled. I believe whatever mechanism governs this dramatic response of cells in PFS is likely to be reversible. Curiosity is one of the main driving forces for me which I’m trying to keep alive.
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I would like to express my condolences to all those who have lost their lives as a result of PFS.
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I’d like to thank the PFS Network team and Mitch for all the work they’ve done so far and for being such a source of motivation.
Wishing you all the best. Stay well. As well as you can.