My Experinces with PFS and potential Treatments


#1
  1. Where are you from (country)? = From the USA. Currently live in Singapore.

  2. How did you find this forum? = Google search – phrase: Post Finasteride Syndrome

  3. What is your current age, height, weight? = 33, 5’11"/180cm, 164lbs/74kg

  4. Do you excercise regularly? If so, what type of excercise? = weigths and running

  5. What type of diet do you eat (vegetarian, meat eater, raw, fast-food/organic healthy)? = Balanced “normal” diet.

  6. Why did you take Finasteride (hair loss, BPH, other)? = Androgenic alopecia / male pattern baldness

  7. For how long did you take Finasteride (weeks/months/years)? = ~11 years

  8. How old were you, and WHEN (date) did you start Finasteride? = Started sometime in 2005 at around 22 years of age.

  9. How old were you when you quit, and WHEN (date) did you quit? = Stopped at the end of 2016, 33 years of age.

  10. How did you quit (cold turkey or taper off)? = Cold Turkey

  11. What type of Finasteride did you use – Propecia, Proscar, Fincar or other generic? = Quartered generic 5mg Finasteride tablets

  12. What dose did you take (eg. 1 mg/day, 1 mg every other day etc.)? = 1-1.25mg per day

  13. How long into your use of Finasteride did you notice the onset of side effects? = Only during the last few weeks of use and thereafter.

  14. What side effects did you experience while on the drug that have yet to resolve since discontinuation? = Just about all of them.

Put an X beside all that apply:

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 to Ejaculate / Orgasm
Reduced Sperm Count / Motility

Mental
Emotional Blunting / Emotionally Flat
Difficulty Focusing / Concentrating
Confusion
Memory Loss / Forgetfullness
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
Increased hair loss
Frequent urination
Lowered body temperature

Other (please explain) = persistent diarrhea

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

  2. If you have pre or post-Finasteride bloodtests, what hormonal changes have you encountered since discontinuing the drug (pls post your test results in the “Blood Tests” section and link to them in your post)? = no tests done yet.

  3. Anything not listed in the above questions you’d like to share about your experience with Finasteride?

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

My Experience with PFS

History:
• 2005 – Started taking 1mg Finasteride daily for androgenic alopecia
Initially, I had 2 wks of mild sexual symptoms after which everything went back to normal
• 2012 – I developed moderate to severe prostatitis or pelvic pain syndrome, which nothing would cure. After numerous tests the urologist told me that it was all in my head.
• 2016 (July) – stopped Finasteride and started saw palmetto just because I ran out of Finasteride
No PFS symptoms at all – a slight and temporary cessation in prostate pain though.
• 2016 (November) – Started again with 1mg Finasteride
Within 3 weeks I was starting to notice lack of libido, ED, loss of morning erection, and anxiety/depression.
• 2016 (December) – One week after stopping Finasteride side-effects/symptoms of PFS hit me hard. I crashed. Symptoms included: extreme and painfully stinging fatigue, depression, anxiety, irritability, complete and total insomnia, suicidal ideation, heavy brain fog, pressure behind the eyes, diarrhea, total loss of libido/the opposite sex, ED, loss of morning or nocturnal erections, rubbery/numb penis, trouble breathing/tightness in chest, loss of the girl I was dating due to ED and the afore mentioned symptoms :frowning:

Initial Treatment Regimen:
For two weeks I worked out every day (even and especially if I felt horrible): hard weight lifting five days a week and running on the other two days. In addition, I took the following herbal supplements and vitamins:

• Ashwaganda - 1g bid
• Shilajit - 60mg bid
• Pycnogenol - 30mg qd
• Tribulas - 1g bid*
• Evening Primrose Oil - 1g bid
• Horny Goat Weed - 600mg bid
• Maca - 250mg bid
• Calcium - 600mg qd**
• Vit D - 300mg qd**
• Vit C - 1g bid
• Zinc Aspartate - 25mg qd
• L-Tyrosine - 500mg qd
• Quercetin - 500mg bid
• Bromelaine - 1g bid
• Omega 3 fish oil - 3 large gel caps bid
• GNC Big 100 (B vitamins with Choline and Inositol) – one tablet qd
• Eating sorghum and millet somewhat regularly

  • = without food
    ** = with food but not with any other supplements


Reaction to Initial Treatment Regimen:

I will start this section with the convention that pre PFS I felt 100% normal (aside from the prostate pain which I had learned to ignore). Conversely, while in the throes of the worst PFS symptoms I was feeling only around 30% normal.

After starting the regimen there was little change in the first few days aside from some small signs of life in my penis (nothing to write home about). By the second week of this regimen I was starting to return to normal with some good days (75%) and some bad (30-40%). At the end of 2 weeks I would say that I was back at around 99% normal, as was my penis. This is huge (no pun intended)! Also, my prostatitis all but disappeared.
I would love to know exactly which supplements are doing the trick so I can stop taking two handfuls of pills per day. If I had to guess I’d say it was the Tribulas, ashwaganda, and perhaps the B vitamins and Omega 3s.

Currently:
I had already decided that I was going to do a water fast based on many of those on this forum who have recommended it (and the added benefit that I might just get my 6-pack back), so I set aside time from work and started. I did 4 days of clean eating detox prior to starting my 10 day water fast; however, I still took the regimen listed above during the detox. The detox consisted of a small amount of boneless/skinless chicken breast and white rice once a day. The rest of my diet was only apples, spinach, chia seeds, and spirulina protein. After 3 days of this diet I felt back to 100%.

I am currently on day 2 of the water fast and I woke up today with many of the symptoms of PFS returning with a vengeance (back to feeling 50% normal as the herbs leave my system). This may be due to lack of food as well; I’m not sure.

Of note: even though I feel pretty bad, the brain fog is not very bad today. However, before I started any treatment for PFS I found that not eating and sleeping had a positive effect on my PFS symptoms—especially brain fog.


Theories on Etiology I Find Interesting:

Some have postulated that those who suffer from PFS might be in a state of Estrogen dominance and that raising Testosterone (with things like Tribulas) while simultaneously lowering Estrogen (with things like Grape seed extract and Aspirin) might be the trick to stopping this horrible condition. I may experiment with this in the future if the 10 day water fast doesn’t shock my system back to normal.
Additionally, some have speculated that our progesterone receptors are absent/malfunctioning, or that some downstream neurosteroid production has been foiled by a lack of sensitivity to the hormone progesterone. Some of these people have experimented with progesterone creams with EXTREMELY mixed results. While this theory may hold some merit, I think it is a bit risky and it would be something I would only try as a last resort.

In Closing:
I will try to update this thread as I go through this strange time in my life. I will say that PFS has single-handedly ruined my relationship with someone I cared dearly about.
For that I am devastated, but I drive on. What else can we do?
If there is something to be gained, some positive to find in this agonizing condition, it is that it perhaps drives us to be better. I am bitter and resentful that this has happened to me/us, but I have decided to only feel anger. Yes anger. The good kind. Anger, when properly managed, can drive us to push above and beyond, and it can change into a sense of healthy determination. I’m not angry at Merk or anyone in particular. There’s no point in that. What’s done is done. There is no going back. This is our reality now, and the only thing we can do is push for a positive change. So I’m angry at this condition, and I let my anger drive me to push harder in the gym, to not eat food even when I’m hungry due to fasting (right now), to change my outlook on life and on people, to make me stop being negative, and lastly to try to find something positive in everything. Sounds like BS I know, but cultivating a positive mental outlook is probably the best medicine there is.
After just two weeks of this mental outlook, of rebranding myself, my life is changing for the better. Intense workouts and eating healthy have made me look the best I ever have. Women now seem drawn to me, and I get a lot of elevator eyes in my direction. It’s just sad I had to go through this devastating condition to find the motivation to take proper care of myself.
I know this condition is beatable. I know it. With the new studies starting at Harvard and Baylor and the weapons we have at our disposal to combat it in the meantime, we should all find relief. And, perhaps we will find a lasting and better outlook on life, which we wouldn’t have found otherwise. Hang in there guys. At the very very worst, we may all end up as Instagram fitness models with no hair, but lots of girls we have to please with our fingers. Things could be much worse.

Cheers.


#2

Just finished my 10 day water fast. It’s amazing how much the fast will make you appreciate food.

24hrs post fasting:

  • brain fog isn’t quite as bad as it was, maybe…hard to tell.
  • ED is the same (errections aren’t as hard as they should be, staying power not quite there, ejaculate way to fast during sex)
  • loss of libido still there, but wasn’t ever real bad.
  • depression and anxiety are notably reduced!
  • fatigue still there

#3

Keep taking these for sure and triple your dosage of the latter three for a week to see improvement. They say to be careful with taking Zinc long term (more than a month), it helps you rebuild semen but you shouldn’t be losing it in the first place.

Add K2/mk7-complex for the calcium distribution.

Good, add bone-broth and eggs with lots of organic butter to that. Cholesterol = testosterone production in the middle of the night.


#4

7 week update since the initial post:

About 4 days after I ended my fast i woke up with throbbing, raging morning wood. My mental fog was gone and i felt 100% back to normal. The interesting thing is, the night before id eaten a lot of Indian food with tons of yogurt. Since that day I’ve been in varying degrees of near total to total remission from PFS (98% to 100% cured). I can have intercourse at full strength (sometimes 3 times a night) again now, and there is no more fatigue plaguing my every step. Depression and anxiety are both back to pre PFS levels. Dick is also back to normal shape and size in the flacid state.

When i do relapse into very very mild PFS symptoms I’ve noticed it’s when i am really stressed or when my stomach/gastrointestinal tract is out of whack.

I’m going to declare myself 99-100% cured because, the relapses are becoming rarer and rarer.

Factors contributing to my success (IMO):

  1. 10 day water fast (reset the endocrine system and allow the gut to return to baseline)
  2. Weight train nearly every day for 30 min to 1 hr (natural, non-exogenous testosterone production)
  3. I am eating very healthily, cut out most sugars and refined grains (wheat mainly) Basically, a non strict paleo diet.
  4. Supplements im taking:
    A. B vitamins
    B. Omega 3s
    C. Tons of probiotics
    D. L-Glutamine (for gut health and a bump for the muscles)
    E. Digestive enzymes and fiber (mainly Bromelaine [for gut health])
  5. Time!

When my gut is happy, so is everything else. This doesn’t entirely make sense to me, unless this is manifestation of the gut inflammation theory of PFS - which I’m starting to believe. What does make sense is that we should stop messing around with our hormone level by using exogenous hormones/supplements. If we want our bodies to return to baseline levels of natural hormone production, then mucking around and sending mixed signals to our body by adding in supplements that alter hormone levels artificially is probably the worst thing to do. If your hormone levels are low then artificially raising them is the last thing you want to do. That will tell the body that it doesn’t need to do any more healing in order to get your hormone (or receptor) levels back to baseline. We SHOULD let our bodies to be low on whatever hormone/receptor it is deficient in, so the body gets the message to up-regulate that particular hormone’s production or receptor expression. Combine that with a ultra strict, 10-day, distilled water fast, to facilitate this healing process, and then a clean diet and exercise afterwards… and boom I’m back to normal, or nearly there.


#5

Hate to break it to you dude but you didn’t have PFS.

You recovered within 2 months and all you did was eat healthy. That’s not PFS. Sorry. You just recovered in A Normal time frame after taking the drug for 11 years. 11 year usage and you had a mini crash one week after only to recover a month or two later. Yep definitely not PFS.


#6

You can not say that. He hit it hard early with many things. If he did nothing we do not know if he would have recovered or not.


#7

It’s been a long time, I’m here to update things.

After the fasting and all sorts of experimentation with supplements, I went through what others refer to as a series of “minicrashes” over the next year. The symptoms that would come back, would be a little less intense with each minicrash, but the crashes were horrible nonetheless. During this time i began to see a pattern. I started to notice that whenever my gut/stomach/GI tract was upset, that was when my symptoms seemed to flare up. And, if i did something to soothe my GI tract the symptoms of the minicrash would resolve.

Even as someone with a doctorate in a medical discipline and as someone who designs and evaluates FDA sanctioned/approved clinical trials for experimental drugs, I don’t know what this means. Obviously, research needs to be done.

I have heard theories that Fin has mild anti-inflammatory effect on the body, including the GI tract. Not sure what the mechanism of action would be, but if that’s true, it may be something to think about for all you guys out there that aren’t finding relief from other common treatments.

In conclusion, aside from a continuing adverse event of slightly weaker memory, I am symptom free . . . as long as i keep my gut happy. If my stomach/bowels get angry, I will literally lose my libido, my ability to become erect, and my zest for life; brain fog settles in and I’m effectively dead to the world.

So, if nothing else works, try calming your gut, guys.

Start a regimen of either an H2 blocker (ranitidine) or a PPI (omeprazole). Use antacid tablets with your food along with a low-acid, whole-foods diet for a month and see if you don’t get better


#8

Do you think fasting made much of a difference? I’m thinking of trying it out eventually, maybe only for 24 hours at a time, but it hasn’t been two months since withdrawing from fin for me.

How do you safely water fast for so long and what’s the necessary refeed process? If you had to do it all over again, would you recommend fasting and for as long as you did?


#9

Are you saying you took omeprazole, @finished? Regardless, just so other posters are aware this is noted to have antiandrogenic activity - which would explain a potential symptomatic improvement if indeed this provided you relief and you’re not just generally suggesting it as a digestive drug that you haven’t personally taken. However, there’s an inherent risk to using antiandrogenic substances for PFS patients, particularly severe cases, so I’m just flagging that for others.

Glad to hear you’re doing better. All the best


#10

I agree with axolotl. If omeprazole can cause gynecomastia and ED then it’s a pretty strong AR inhibitor. I’d avoid it.


#11

I used to read this forum and stumbled upon this thread recently. My story is pretty similar to FINished, with a few major twists, so I figured I would share it. I started Fin in Jan 2017 (age 23) and took it for one month. (Side note: I was taking Saw Palmetto for at least a year before that, at very high doses for part of the time because I had no idea wtf I was doing. Never had sides until I took fin). At first my sides were just stomach/digestion related but towards the end of the month I started having some problems down below and stopped immediately. It wasn’t until then that I found out about this whole universe of former Fin users who were having long term side effects and it scared the shit out of me. My sides continued to get worse until March 2017 when I crashed. Crash was pretty typical of what you read about here so I won’t go into too much detail. I was in bed for almost a week straight. I felt like I had ruined my life and quite honestly reading this website was playing into my depression. I finally decided I had to get out of bed and come up with a plan to try to make myself feel better.

My diet was already pretty clean, for me it was just cutting out that occasional cheat meal and any occasional sugary snacks/desserts.

Starting taking Omega 3

Staring taking probiotics

Got back in the gym for the first time since I started taking Fin (weight lifting and cardio 5 times a week)

And perhaps most importantly I stayed positive. I felt an immediate lift when I stopped beating myself up about the whole thing. I approached everyday thinking about how I could make the most of it, and it helped me immensely.

By June/July 2017 I was feeling pretty good. The stomach sides, which were always the biggest problem for me, lasted the longest and continued to flare back up just as soon as they had disappeared long enough for me to forget about them. Every few months I would have an “episode” where my stomach/digestion went haywire and some of the other sexual side effects would come back. These usually last 4 - 7 days. I’d say it happened 4 times between June 2017 and June 2018. I will also add that I don’t think my sex drive is quite what it was prior to Fin. But outside of these episodes I don’t have major problems.

Now here’s the twist. In June 2018 while I was dealing with a particularly bad episode I decided to see a doctor. To be fair, my stomach had been generally more temperamental than normal over the last few months. Just attributing my visit to an “episode” isn’t quite fair. To my utter shock, I tested positive for Celiacs disease, which was confirmed by a biopsy a few weeks later. I have no family history of celiacs and never had any stomach problems (or health problems, for that matter) prior to taking fin. It was an interesting development to say the least, and for a couple reasons. I would go months at a time feeling pretty normal and I certainly was eating my share of gluten. in fact when I got the call from the doctor about Celiacs, I had just finished a plate of penne vodka, which I now refer to as the last supper. The whole thing is very strange.

So I’ve been gluten free for a couple months now and here we are in early October and here comes another episode. The discomfort in my lower abdomen has been particularly bad this time around. Sexual side effects are also there. I’m considering fasting for a week or two since it sounds like some people have had some success with that.

Overall, I can’t complain, a lot of people have it way worse than me. I can’t help but wonder how celiacs played into this whole thing. Is it just a coincidence?


#12

fin alters your gut microbiota which is confirmed by studies, im pretty sure u could normally tolerate gluten but now cant due to fin, same thing happened to me. Whenever I eat glutten now my stomache swells like those starving kids in africa, my diet before fin was tons of carbs (pasta, rice) without any problems


#14

I’m not very good at using this site, but I’ll try to answer some of the questions posed.

I think water fasting helped the overall process, but it’s really hard to do it for 10 days and tbh, I’m not really sure it was the biggest part of the cure. Just getting the GI tract calmed down is the main goal. If you do do a fast, i would suggest a few things: Don’t drink distilled water. Go for mineral water instead. Distilled can be somewhat acidic, which hurts the GI tract. I honestly don’t know if I would fast again. At least not for 10 days. Maybe 5…

Yes, i agree with what most are saying here. It must have been that Fin altered my gut microbiome and other things, and I hope that i haven’t gotten celiac disease too.

Overall, i would say that when my gut is happy, there is no PFS. If my gut gets into a bad mood, which it still does from time to time, I can crash pretty quickly. So am I cured?..I don’t know if that really counts, but at least I am sometimes.


#15

What exactly does a 10 day water fast consist of ? Thanks


#16

A water fast is simply refraining from eating anything with any caloric content. The only thing you put into your body is water. Can range from 3, 5, 7, 10, and all the way up to 20+ days.

It’s hard.