- Where are you from (country)?
US - 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?
34 years old, 6’2, 170 lbs - Do you excercise regularly? If so, what type of excercise?
5+ times per week. Weight training, rowing, biking, etc… - What type of diet do you eat (vegetarian, meat eater, raw, fast-food/organic healthy)?
Vegan - Why did you take Finasteride (hair loss, BPH, other)?
Hair - For how long did you take Finasteride (weeks/months/years)?
about 8 years, with a year or two break in the middle (no reason) - How old were you, and WHEN (date) did you start Finasteride?
started taking it in college I think, or shortly after. Approx 20 years old, 2003/4? - How old were you when you quit, and WHEN (date) did you quit?
- Christmas day 2017
- How did you quit (cold turkey or taper off)?
cold turkey - What type of Finasteride did you use – Propecia, Proscar, Fincar or other generic?
propecia - What dose did you take (eg. 1 mg/day, 1 mg every other day etc.)?
1mg daily (started with 1mg Propecia, then generic 1.25 - 5mg tab cut in quarters - How long into your use of Finasteride did you notice the onset of side effects?
the very end, April '17 - What side effects did you experience while on the drug that have yet to resolve since discontinuation?
Started with ED, then energy levels, libido, depression, muscle atrophy and fat accumulation
Put an X beside all that apply:
Sexual
[X] Loss of Libido / Sex Drive
[X ] Erectile Dysfunction
[X] Complete Impotence
[X ] Loss of Morning Erections
[ X] Loss of Spontaneous Erections
[X ] Loss of Nocturnal Erections
[ ] Watery Ejaculate
[ ] Reduced Ejaculate
[ ] Inability to Ejaculate / Orgasm
[ ] Reduced Sperm Count / Motility
Mental
[X ] Emotional Blunting / Emotionally Flat
[X ] Difficulty Focusing / Concentrating
[X ] Confusion
[X ] Memory Loss / Forgetfullness
[X ] Stumbling over Words / Losing Train of Thought
[ ] Slurring of Speech
[X ] Lack of Motivation / Feeling Passive / Complacency
[X ] Extreme Anxiety / Panic Attacks
[X ] Severe Depression / Melancholy
[X ] Suicidal Thoughts
Physical
[ ] 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
[ ] Weight Gain
[ ] Gynecomastia (male breasts)
[X ] Muscle Wastage
[X ] Muscle Weakness
[ ] Joint Pain
[ ] Dry / Dark Circles under eyes
Misc
[ ] Prostate pain
[X ] Persistent Fatigue / Exhaustion
[ ] Stomach Pains / Digestion Problems
[ ] Constipation / “Poo Pellets”
[X ] Vision - Acuity Decrease / Blurriness
[ ] Increased hair loss
[X ] 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?
chlomid, arimadex, HcG -
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)?
Did not have recent labs before the symptoms. Testosterone levels came back lower than I expected (after symptoms) at ~400. At my age and level of fitness, I was surprised, though they were technically “in range” -
Anything not listed in the above questions you’d like to share about your experience with Finasteride?
-
Tell us your story, in your own words, about your Finasteride usage and side effects experienced while on/off the drug.
I had zero problems while on finasteride for almost a decade. In April '17 I began to have erectile issues, starting with an inability to get 100% erect like I had all my life. I had taken a supplement at the gym for the first time of my life (Anavar), earlier that year and assumed this was somehow related to that (which everyone thought was highly unlikely). At first viagra worked, and I was thinking no big deal I can ride this out with Viagra til I get better. After a month, Viagra stopped working. Went to my general doctor, (Aug '17) he saw that my labs were within the reference range, and said nothing was wrong with me. Went to a Urologist (Sept '17), he said don’t worry we’ll get you up and running again - he put me on daily 50mg Chlomid. This is where things took a nosedive for me, I’m not sure if it had anything to do with the Chlomid, the depression that was setting in, or the progression of the toll finasteride was taking. My energy dropped like a rock, motivation was gone, libido non existant, complete and total ED, suicidal thoughts etc… In october my labs came back with Testosterone levels just over 1000, but all symptoms remained, and had worsened. Doctor increased the dose to 75mg. Zest for life, drive, ambition, motivation - all gone.
Urologist said he was baffled, he’d never seen anyone like me. Sent me to get a pituitary MRI, even though my prolactin levels were fine, that came back clean. Told me to go to the Boston medical clinic (ED clinic) so they could inject me in the penis to see if it would invoke a response. They have 4 tiers of potency in their quad blend medication. They were nervous to even try with me due to my age, health, labs, and (i forgot to mention) 5mg once daily Cialis that I’d been on for 2 months. First shot, nothing, 2nd, nothing, 3rd minimal, 4th… the 4th they say they reserve for severe diabetics with circulatory problems… that got me up to about 90%. (To be fair here, I sincerely don’t think they know how to administer the drug effectively, I’ll explain why below)
Began seeing a psychiatrist in October/November. She’s been a godsend. Started to read about finasteride, was terrifying, and assumed that wasn’t me. Made an appt with an endocrinologist in early December, and this was a great moment for me, I assumed if anyone could fix me it would be an endo. Did another full workup with her, and even entered the notion of finasteride and specifically 5AR and if there was anything we could test related to that (she said no). I’ll never forget, she called me a couple of days before christmas with results and said “your labs all look great, maybe you should seek another opinion. I hope you get better, good luck”. Good luck…
Sorry for the timeline jump, but a couple of weeks before this, in early/mid december, my psychiatrist put me on 150mg Wellbutrin. This raised the floor of how awful I would feel about myself, but did little to turn around my mood. I became much more antisocial at this point (not due to the wellbutrin). Was devastated by the endocrinologist, and thought… who can solve any medical problem… the mayo clinic! Called the mayo clinic, and was able to get in to their Rochester MN (their top urology dept) location in mid January. Mayo doctors ran the same type of test, injected me with their medication and got a full erection that they had to give me 2 follow up injections to go down. Did another ultrasound and said I was healthier in term so of blood flow than most people my age. Said he’d heard about PFS, but never seen it in person, but fortunately one of his close friends is running one of the largest studies in the country out of Baylor, Houston. He shared my case with him, and the morning I was scheduled to fly home I called him and said can we please test my DHT levels, and can we please consider HcG or Proviron (ideas from reading boards and googling). Ran labs that morning, came back that my DHT levels were in range, but the bottom of the chart. My Testosterone levels (Stopped chlomid in early December) were pretty low considering the morning read at 400. Side note… I realize testosterone levels swing in the day, and decline, but a healthy swing is in the range of 30%. Even off of chlomid or any test boosting agent, my swings were wild… more like 60%. Anyways, he wrote me a script for HcG (2,000 IU’s M/W/F along with 1mg anastrozole). 2 weeks to the day after taking this, Feb 5th, I woke up and recognized myself in the mirror for the first time in 7 months. Felt cured in every way. A little over a week later, I was having issues maintaining a full erection again, called Mayo and they said to remove the anastrozole. Felt great again. This lasted about a month, until the same thing happened on March 13th. At this point, I set up a followup appt with the doctor in Houston. These sides again lasted a couple of days, maybe a week, then back to normal again.
Meeting with the Houston doctor on March 30th of this year… Was feeling great, and excited because this guy… of anyone… would be able to help. My biggest concern was that he would tell me I couldn’t stay on HcG long term and I was TERRIFIED of stopping because it worked so good. I told my psychiatrist “I can’t go back”. Meeting went well, he said I’m further along than most because the treatment I was on (2,000IU’s HcG and once daily 5mg Cialis) was exactly what he would have suggested (He did move me from MWF HcG to every other day). Said we would monitor my levels and make adjustments accordingly. He also said he could save me money by having a compounding pharmacy fill my prescriptions. Felt great for another couple of weeks, and then noticed that my erectile issues were coming back. Reached out to the doctor voicing my concerns, and thinking that this F’ing compounding pharmacy is what messed me up with their placebo sugar water. He told me to increase my injection to 2500 IU’s every other day. I did that, but also told them that I was switching back to name brand HcG (Pregnyl) and I didn’t give a shit about any cost with this. That was a little over a week ago (Sunday April 22nd was first return to Pregnyl). At first, I viewed this as a compounding pharmacy issue, and that in 2 weeks I’d be right as rain again with the REAL HcG. Maybe that’ll happen… I doubt it. In the last week, reading even more (I’d made myself stop googling about PFS cause it was too scary), it made me think “wait… is this the 2nd time HcG stopped working (first time being the one I remembered) or the 3rd?” If it was the 2nd time, I could rationalize that in my mind… adjustment to start and compounding pharmacy now… the 3rd time would be a whole other can of worms. Obviously, it was the 3rd. That put me in a sincere state of shock when I realized. That’s when I read more and more on HcG, and how for almost everyone it works as it has so far for me. Amazing comeback, temporary, followed by hard crashes. Not a long term solution. This fit my scenario much closer…
The last week has been crippling for me. I voiced my concern to my dad and psychiatrist since this started that “This could be permanent”, but always subconsciously was mad that this syndrome was robbing me of today, and tomorrow, but even though I was wasting the prime of my life… we’d get it sorted. The last week is when it really hit me though, that this is brain damage. That this is, in some respects, permanent. That the life I’d envisioned for myself… relationship, family, happiness… was all being taken off the table. I described it to my psychiatrist by saying, “look… I know that I can make the best of this and be appreciative of what I have. That’s why I’m here, and that’s why I continue to come here… But… what’s undeniable is that the ceiling for happiness and fulfillment in my life has certainly been lowered. That’s what I’m coming to terms with”. That is the hardest part. I’ve had a couple of full on breakdowns this past week, and panic attacks for the first time in my life. It’s like waking up after a car crash and realizing you have no legs. That type of life altering moment… which is why I’m here.
Sorry for the sob story at the end, I am sure there is plenty of that on here, I just wanted to share intimately what my perspective has been. I need to share, I need to have a voice to people that understand. The most frustrating thing is that even the people I’ve chose to bring in on this, you can tell that they look at it as individual symptoms… oh ya ED, that would make me depressed too. Low energy, just power through it. Etc… They don’t realize that the entire ship is sinking, and I’m not at the wheel anymore.
I’m coming to terms with the fact that my life has changed. The down moments make me realize that why I’ve always been highly intelligent and sharp… a piece of that is gone. That as charming as my life has been, this year is the official end of my childhood (I realize how this sounds at 34, I’ve had an amazing life up til now, which I’m incredibly grateful for), and I’m fighting to keep my spirit alive. When I’m having moments of clarity, perhaps… I think… many people have gotten better over the course of 3-7 years. That sounds awful… but maybe use this time to focus on being a better person, a better brother, a better son… work your ass off to make yourself as successful as possible (even with the challenges), so that whenever this ends (if… but I try not to think about that), you’ll be in position to make the absolute most out of the rest of your life and enjoy the hell out of it. The swings in between are brutal.
Currently… I’m on 450mg Wellbutrin, the max dose, and still have a lot of suicidal thoughts. I’m not going to do it, it’s just amazing to me that I could be laying in bed and thinking “just do it”. In those moments I close my eyes hard, and cuddle up with my dog. The best part of my day is going to sleep, and the worst part is waking up. Facing this is almost too much.
Maybe the HcG will kick back in, but I doubt it. I sincerely doubt it will prove to be a sustainable answer either way. I know TRT is next, and I have a lot of mixed emotions about that (please don’t rant about how it works for no one, even if that’s the case I need to maintain some hope). I’m just processing right now, in between moments of 100% breakdown. Luckily I work from home, so I can break down when I need to. My job also knows that I am permanently on call for any medical appointments I can get, and that my work schedule is secondary. They understand.
I’m trying to cope. I’m not ready to give up trying to find the answer… my opinion is that anything resembling a full cure will be over time and the body healing itself. I’m not looking for that, I just want to mask my symptoms, or as much as I can. I want a family, I want to be a man, I don’t want my life’s course to be altered because of a hair loss medication with minimal warnings.
The brain fog is hard for me to delineate between what is depression and what is not. I lose my place in conversation at times, which has never happened to me prior to this past year. Yada yada… you guys know it all.
couple of things to close.
first. The anavar. That may separate my case from most of you, but I have been upfront with every physician I have see and no one thinks there’s a chance that is playing a role in this. I just don’t want the conversation to become fixated on this.
2 questions I have…
TRT. Whether it works or not, I don’t care. My impression of the root issue with PFS is that it is receptor damage in the brain. Maybe flooding the system with absorbant materials will trigger the body to fix the receptors. Long shot, sure, but I’ll buy that as an attempt. My question is… does anyone think that IF there is a healthy date in my future, that attempting TRT will delay that, or push it out? Aside from test production, I’m not worried about that. I’m saying, could TRT do more receptor damage? I don’t see how, but that’s my only reservation to trying
Stem cells. I’ve done a lot of research on this, ironically it’s one of the leading ideas around hair growth, restoration and preservation now. Even if you are injected in your knee for cartilage damage, the stem cells make their way through your body and identify problems. This happened with my uncle, who went in for his knee, and 4 months later his ailing shoulder was better for the first time in a decade. To me, this problem if it is receptor related, is screaming for stem cells. They can repair a torn labrum, and in cases help people who have had spinal injuries. More importantly… they are exploring the use of stem cells for patients with Autism, Alzheimers, and other brain related issues. I’m not trying to push this as the cure, I’m just asking if it has been discussed. I will book a flight to panama or south korea tomorrow to give it a try
Thanks to anyone who read this. I’ve found writing things down (I keep a journal now) is extremely helpful part of the coping process, for me at least.