PFS - Cognitive, Sexual and Physical Symptoms [4 years in oral and topical Finasteride]

Member Stories
#1

Where are you from (country)?
Spain

How did you find this forum?
Google Search - Post Finasteride Syndromme

What is your current age, height, weight?
30, 174cm, 65kg

What specific drug did you use (finasteride, dutasteride, saw palmetto, etc…)?
Finasteride 1mg
Finastopic (Minoxidil 5% + Finasteride 1%)

What dose did you take (eg. 1 mg/day, 1 mg every other day etc.)?
Finasteride 1mg - Everyday
Finastopic (Minoxidil 5% + Finasteride 1%) 1ml - Everyday

What condition was being treated with the drug?
Hairloss

For how long did you take the drug (weeks/months/years)?
Finasteride 1mg - 2.5 years
Finastopic (Minoxidil 5% + Finasteride 1%) - 10 months

How old were you, and WHEN (date) did you start the drug?
Finasteride 1mg - 27 years old, December 2016
Finastopic (Minoxidil 5% + Finasteride 1%) - 29 years old, July 2019

How old were you when you quit, and WHEN (date) did you quit?
Finasteride 1mg - 29 years old, May 2019
Finastopic (Minoxidil 5% + Finasteride 1%) - 30 years old, May 2020

How did you quit (cold turkey or taper off)?
Finasteride 1mg - Cold Turkey
Finastopic (Minoxidil 5% + Finasteride 1%) - Taper Off

How long into your usage did you notice the onset of side effects?
3 weeks

What side effects did you experience that have yet to resolve since discontinuation?

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 - PARTIALLY RECOVERED
[ ] Reduced Ejaculate
[ ] Inability or Difficulty to Ejaculate / Orgasm
[ ] Reduced Sperm Count / Motility

Mental
[X] Emotional Blunting / Emotionally Flat - PARTIALLY RECOVERED
[X] Difficulty Focusing / Concentrating
[ ] Confusion
[ ] Memory Loss / Forgetfulness
[X] Stumbling over Words / Losing Train of Thought - PARTIALLY RECOVERED
[ ] Slurring of Speech
[X] Lack of Motivation / Feeling Passive / Complacency
[X] Extreme Anxiety / Panic Attacks
[X] Severe Depression / Melancholy - RECOVERED
[ ] Suicidal Thoughts

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

Misc
[ ] Prostate pain
[X] Persistent Fatigue / Exhaustion - RECOVERED
[ ] 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
[X] Lowered body temperature - RECOVERED

Other (please explain)
[X] Lack of brain-penis connection - PARTIALLY RECOVERED
[X] Uncomfortable burning or numb sensations on the penis - PARTIALLY RECOVERED
[X] Prominent veins with painful/uncomfortable sensitivity on the penis
[X] Low Energy - RECOVERED
[X] Low Mood - RECOVERED
[X] Difficulty to deal with frustration (anxiety) and to relax after stressful situations
[X] Anhedonia - PARTIALLY RECOVERED
[X] Inability to rest regardless of the number of sleep hours - PARTIALLY RECOVERED

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

  • Tadalafil 5mg (every second day)
  • Acetyl L-Carnitine 1000mg (3 times per day)
  • L-Arginine 2000mg (3 times per day)
  • Healthy and varied diet (vegetables, fruit, fish, etc.) trying to keep carbs and sugar low
  • Strict sleeping routine (8h, same time every day)
  • Moderate/High Intensity Sport at least 4 days per week (Running and weightlifting)
  • Simplify and structure daily routine following the same every day

UPDATED 04/09/2020

  • Sodium Butyrate 600mg (twice per day)

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)?

June 2020 Hormone Panel

  • Liver irregularities for first time in my life. High bilirubin and low transferrin even though iron is mid-range.
    tempsnip
    tempsnip1420×528 138 KB

September 2020 Hormone Panel

Tell us your story, in your own words, about your usage and side effects experienced while on/off the drug.

My story with the drug is atypical because I took oral Finasteride 1mg for almost 3 years with mild symptoms (mainly sexual, libido and erections) which gradually worsen. Mild gynecomastia began to be an issue and new purple and prominent veins appeared on my penis; inflammation sensation on them followed until I decided to quit the drug cold turkey. I had a few days in which I had higher libido and close to full erections for 2-3 days and suddenly my whole baseline decreased and stayed the same for 2 months. This is when I believe I had my PFS crash.

My doctor suggested trying topical Finasteride (1%) with Minoxidil (5%) to preserve my hair as the topical solution should not give me any sides due to its poor systemic absorption. Big mistake.
On the first months, I did not notice any further sides and the effect on hair was better than while on the pill. After 7 months of use, I noticed that I did not have low libido but any libido at all. Moreover, my erection became weaker (being for the first time not always functional) and I was not able to concentrate properly at work. I decided to stop the treatment, this time tapering off at a reduced dose.

A few days after eliminating all drug from the system, everything became much worse, particularly in the cognitive department. I lost all ability to focus, I had no motivation to even do my hobbies, I felt the energy of an 80-year-old person, I could not get up from bed in the morning because I was waking up extremely tired regardless the number of hours. Funny enough, the tiredness only used to last 15-20 minutes since I was able to stand up from the bed and begin my daily activity.

I had to leave my career in investment analysis and, up to date, I have not been able to try it again because I cannot read a full-page and be focused in something for more than 2 minutes.

However, not everything is a hopeless post of bad news. Since July 2020 I am under the supervision of a doctor with experience in PFS in Amsterdam (protocol above) and have made significant improvements concerning mood, energy and sleep improvement. Running is being a game-changer for me. There is still a long run towards being a functional person again but I do not feel miserable anymore and that is a BIG difference because I can be much more rational towards the disease.

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#2

I can definitely see the investment analyst in you - very concise details regarding the situation.

Did you notice nausea when taking ACAR and L-arginine?

I noticed fleeting benefits with my experimentation with L-arginine that seemed to dull the benefits with time. I took 1 gram of ACAR a week and quit due to nausea (particularly bad when waking up.) Also, i did not notice any positive benefits from the ACAR.

#3

Thank you, I try to keep it tidy!

I take ALCAR (Acetyl L-Carnitine) with food and L-Arginine on an empty stomach. I have never had nausea doing it this way. As you can see, both supplements are taken on a high dose. This is 9 tablets/capsules every day, plus 1 tablet of Tadalafil every second day. Quite a challenge!

So far, I do not know what part of the protocol makes me improve the most (I believe exercise) but my doctor stated that I should see improvements from the 3rd month onwards and that it is a positive sign I am already feeling partially better only 2 months into the protocol, he was not expecting that. Nevertheless, he told me that I should literally forget about being the same as before and aim to get as many gains as possible. Hence, I keep my expectations low but my spirits high!

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#4

So far, I do not know what part of the protocol makes me improve the most

This has always been my biggest issue with cocktails of supplements/drugs. Makes it difficult or impossible to narrow down which supplement if any is benefiting you. Though in our situation caution is often thrown to the wind in search of at least a semblance of relief and I too am guilty of this.

I lost all ability to focus, I had no motivation to even do my hobbies, I felt the energy of an 80-year-old person,

This really is the worst part of PFS in my opinion. I am over 3 years in and still require tadafil - the sexual sides are indeed terrible. Though, the loss of cognitive ability particularly right at the crash and the months after have got to be by far the most nightmarish of the bunch. While that cognitive loss absolutely improved for me, i still regularly complain of feeling like an 80+ year old man. That is really the only way to describe it.

I take ALCAR (Acetyl L-Carnitine) with food and L-Arginine on an empty stomach. I

Sounds like a good plan. I didn’t notice any issues with Arginine on an empty stomach, only Aceytl L-Carnitine. 3 grams a day is indeed a large dose - though that is also the dose that is typically administered in studies regarding ACAR.

#5

Welcome to the forum and I’m sorry to read of what happened to you @Aquarius330, it is a story so familiar here. It’s also encouraging to hear you’ve experienced the improvements you have in such a short period since stopping the drug.

One thing I’d give a word of caution on is using substances/supplements/hormone therapies etc. It’s great that you’ve had improvements from the things your doctor in Amsterdam has advised on. At first glance, nothing jumps out at me from the substances you’ve listed as being previously harmful to PFS patients. As a new patient, you may not be aware but some members on this forum (and elsewhere) have worsened their condition, some permanently, through attempts to medicate their PFS. Hopefully your doctor is aware of what not to advise you to take, but just in case, substances which are antiandrogenic in particular should be avoided. Things like resveratrol, tribulus, milk thistle and others have been implicated in worsening for patients. It’s also worth noting that many patients make natural improvements through the passage of time, particularly in the first 6 - 12 months, so at 4 months off the drug, hopefully you see more improvements naturally.

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#6

Hey man, good to hear about your improvements. I realized you live in Spain and the doctor you consult lives in NL. How does that work?

#7

This is the reason why I am not including further supplements at the moment and just focusing on my doctor’s recommendation for the first 3 months. But yeah, it still happens. Another issue is to identify what part is an improvement to the baseline and what part will worsen after cessation of the supplementation/meds/lifestyle changes.

For me the worst part is the feeling of losing part of yourself, the lack of connection with your own body and the reduced ability to connect with others. Sexually, what bothers me the most is not the erectile disfunction, it is the “emptiness” feeling where you are intimate with your partner and you cannot feel the sexual urgue nor emotionally connected.

The energy issue was “easy” to fix when I began to exercise on almost a daily basis. I asked my partner for help to get up from bed at 6.30am and push me out of the house, even if it was just for walking 30 minutes. The main thing was to get used to that routine to activate me at the beginning of the day.
I remember that the first week my whole body felt heavy and weak (lots of muscle loss, fatty /loose looking skin even though I was on my weight) and I could not run more than 10 minutes or even do two push-ups in a row. But I tried a little bit every day and, after a couple of intense weeks of effort, my muscles began to feel responsive again and I could workout.

Subsequently, this tremendously helped my sleeping patterns and gradually I was able to get up energised and, which is more important, by myself!

Thank you for the welcoming message.

I feel very lucky about this doctor because he is very realistic (or even pessimistic) about the outcomes of this disease and admits nobody (including himself) has a cure or a deep knowledge about the underlying changes our body goes through at intracellular level. Nonetheless, he is very up to date with research on PFS, has a cautious approach on the issue and, which should be basic but it is uncommon, he empathises and understands how much this syndrome affect my career, social relationships and wellbeing.

He told me Tribullus Terrestris may potentially help with libido but under two premises only:

  • Low dose (100mg)
  • Wait until a second phase in the treatment, it is too soon. Now he is trying to put my body in the best possible state to assist it in its natural healing process.

No doubt that time plays a major role, particularly when you are able to get deep sleep which is something I am still working on but slowing improving week after week.

Do you want to twist it more? I am Spanish but actually live in the UK.

Basically I contacted several international doctors around the world with my case and I initiated contact with a few of them who showed interest in my case. Bearing in mind that I could not travel due to COVID-19, we had a fairly long video consultation where he evaluated my case and gave me some suggestions to cope with the disease, the above protocol and some guidelines of what I could expect from future.

I also keep in touch with a German neuroendocrinologist and will be soon seeing a Spanish endocrinologist, both with experience in PFS. In addition, I will see a urologist in Spain in a few weeks for the sensitive veins and, potentially a Doppler test.
Lastly, my GPs in Spain and the UK are informed about everything but they cannot help much and the one in Spain believes I have a great imagination.

1 Like
#8

What do you mean by “twist it more”? I was simply asking because I’m interested to know if he would be willing to consult other people (i.e myself) who don’t live in the NL.

#9

I mean to make it more complex.

After reading your member’s story, I have sent your a PM suggesting a more suitable professional for your symptoms.

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#10

I was talking to another user privately and my exercise routine in terms of running came up. For me, running made (and makes) a difference in my energy levels pretty quickly. I do not know if this will work for you but definitely worth a try. This is my routine:

  • Get up at 6.30am (Ask somebody for help if you need it)
  • Have a 15 minutes breakfast (healthy and light) and go out on sport clothing.
    IMPORTANT: do not look at the phone nor anything, forget about everything. Just take whatever you need (music, keys) and focus on the mission of going out. Once you are on the streets (regardless of weather), begin to run!

Choose one of the following activities (and alternate every day you do it, at least 4 days per week):

TRAINING TYPE I
Run at your own pace for as long distance as you can. The main objective is not to be quick but to run for a long time. Similar to training for a half-marathon. Never stop running, even if you have to slow down.

TRAINING TYPE II
Choose a distance you feel comfortable with (5km for instance) and try to improve time. You do not need to improve every single time but make a good effort each time. Never stop running, even if you have to slow down.

TRAINING TYPE III (Not for beginners, focus on Type I and II only for the first month)
Interval training. Warm-up for 5 minutes and, after that alternate 30s sprinting with 2 minutes walking or jogging. Repeat several times. This kind of training is much better done with a pulsometer (do not sprint until you are below 130 beats per minute).

By doing this, I improved my energy levels within 2-3 weeks. I hope it is helpful!

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#11

Did it improve anything else?

#12

Clearly effect in:

Low Mood
Low Energy
Muscle Weakness

For anyone dealing with depression this is a MUST.

#13

I’m seeing arginine coming back more and more in recent recovery stories…

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#14

Same here…that and ALCAR.

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#15

UPDATED 04/09/2020 - New implementation to the protocol

  • Sodium Butyrate 600mg (twice per day)

I will be visiting doctors and getting new blood test over the following 2-3 weeks.

#16

Thanks for updating us @Aquarius330. Just as a word of caution on sodium butyrate - as you may not be aware - recently another member worsened his situation significantly from its use

Did your doctor recommend sodium butyrate?

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#17

It was my iniciative but I checked with him before taking it. While he has many question marks about that epigenetic theory and the methodology and selection bias of the main study behind it, he told me side effects from Sodium Butyrate at that dose are very rare and I could try it if I really wanted. Not essential through.

#18

That’s probably true when pertaining to non-PFS patients. However, PFS patients can react differently, as I’m sure you’re keenly aware. I developed severe PFS from 1 mg of finasteride while other men can take 5 mg per day for years and have no appreciable ill effects. Anyway, it is of course up to you if you choose to take it, just thought you should know it’s not without risk.

#19

Apart from that unlucky experience, there are also 2 recoveries on butyrate.
Is there any biological explanation on why should make things worse?
Butyrate is an anti-inflammatory, his doctor is pursuing that going with L-arginine.
So, they are theoretically aligned both supplements.

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#20

I assumed he was already aware of the positive impressions of it because he added it to his supplement use. On those 2 recoveries, who are you referring to? I recall @MOONCHILD said it helped him but who else?

I’m no expert so this is a question for somebody else, my understanding is that it interacts with the AR.