40 Weeks off Propecia: 280th day off drug (posting a little late)
10 month update. Decided not to post anything as not much has changed.
Hi plzrecover,
First of all, thank you for continuously updating your status. I am also in a similar situation as you. I took only three pills and it has been three months, and though I have recovered from the mental side effects, I still have a low libido/weak erection and low semen count. I hope we both recover. I wanted to ask you, did you fast at all? And, have you considered taking any of the steroids such as Androhard.
All of my markers are normal except Prolactin, which is 36 ng/mL, more than double the high for men (15ng/mL). I have not tested 3 Adiol G. I am getting random headrushes, feel confused, complete short term memory loss to an embarrassing level, lack of sex drive, hard to get erection, and even harder to get to ejaculation. My brain feels tired, like my adrenal glands are burned out. I catch myself completely zoning out all the time. No focus.
Has anyone dealt with this?
Cabergoline brings down prolactin and helps restore libido watch the video
There’s a guy on solvepfs who recovered using clomid at 12.5mg once every 1 or 2 weeks, you need small stimulation you’re overdosing, I’m surprised you don’t feel tired using so much clomid. He cycled clomid with tongkat ali.
who is this guy? i havent seen it
[Size=4]THE BIG ONE YEAR[/size]
52 Weeks off Propecia: 356th day off drug
Updating this for reference. 0 being horrible 10 being prefin
EVERYTHING THAT FOLLOWS IN RELATION TO INITIAL CRASH
Well, here I am at 1 year. Not much better than when I came off.
Sexual
[x ] Loss of Libido / Sex Drive 2-3/10 No changes
[x ] Erectile Dysfunction 7.5/10 Perhaps marginal improvements
[ ] Complete Impotence
[ ] Loss of Morning Erections
[x ] Loss of Spontaneous Erections 3/10 No changes
[ ] Loss of Nocturnal Erections
[ ] Watery Ejaculate
[x ] Reduced Ejaculate 7/10 Perhaps marginally improved. I’m thinking there’s a 30% chance I’m infertile at 20yrs old
[ ] Inability to Ejaculate / Orgasm
[ ] Reduced Sperm Count / Motility
Mental
[X] Emotional Blunting / Emotionally Flat 5/10 Improved as I learned to accept my new crippled state
[X ] Difficulty Focusing / Concentrating 5/10 Debilitating brain fog. 5/10 (read that I feel 50% conscious) The same.
[ ] Confusion
[x ] Memory Loss / Forgetfullness 7/10 About the same, perhaps marginal improvements. Neuroplasticity?
[x ] Stumbling over Words / Losing Train of Thought 8/10 About the same, perhaps marginal improvements. Neuroplasticity?
[ ] Slurring of Speech
[X ] Lack of Motivation / Feeling Passive / Complacency 5/10 Marginally improved with acceptance of shit condition
[ ] Extreme Anxiety / Panic Attacks
[x ] Severe Depression / Melancholy 6-7/10 Improved the most since quitting. Still something that affects me, however
[x ] Suicidal Thoughts 8/10 Much improvement since crash; still come to my mind time to time
Physical
[x ] Penile Tissue Changes (narrowing, shrinkage, wrinkled) 5/10 The same. Still shrunken.
[ ] Penis curvature / rotation on axis
[ ] Testicular Pain
[x ] Testicular Shrinkage / Loss of Fullness 7/10 The same. Fluctuates but never Pre-PFS
[ ] Genital numbness / sensitivity decrease
[ ] Weight Gain
[ ] Gynecomastia (male breasts)
[X] Muscle Wastage 4/10 The rate has been a constant loss since quitting. The same.
[x ] Muscle Weakness 4/10 A constant decrease in strength correlated to how much muscle I have. The same.
[X ] Joint Pain Just clicking, probably related to muscle loss. The same.
[X ] Dry / Dark Circles 7/10 Probably caused by minoxidil, but definite stress changes to face. The same.
Misc
[ ] Prostate pain
[x] Persistent Fatigue / Exhaustion Good improvements since quitting. Still not where I need to be as a “healthy” 20yr old.
[ ] Stomach Pains / Digestion Problems
[ ] Constipation / “Poo Pellets”
[x ] Vision - Acuity Decrease / Blurriness Weird haze related to brain fog. The same.
[x ] Increased hair loss Stable rate since crashing. Idk if PFS related or MPB.
[ ] Frequent urination
[X ] Lowered body temperature Hands and extremities are cold all the time. The same.
[ ] Other (please explain
1 Year Changes to Symptoms
No changes
*Brain Fog–Worst side effect. If this went away I don’t even know how happy I’d feel. Was the first thing side effect I experienced during my crash, and there have been no changes since waking up with it exactly one year ago today.
*Muscle Loss–Extremely difficult side effect for me because I was(and still am) a natural bodybuilder Pre-PFS. Despite boosting test levels and lowering estrogen, there has been no stop to my loss. It has been constant and relentless no matter what I do. It includes extreme wastage near joints (wrists, elbows, knees, ankles) that seemed to occur overnight during the crash.
*Hypogonadism and other hormonal issues–Not a surprise among PFSers. Awesome at 20.
*Muscle Weakness–Related to fatigue and directly correlated to my muscle loss.
*Sleep–Loss of Stage 3/4 sleep as shown by sleep studies.
*Shrinkage–Really no changes here. Fluctuates randomly but never goes back to Pre-PFS.
*Libido–Low with no changes. Unfortunately not one of the problems that bothers me (even as a 20yr old).
*Spontaneous erections–Still extremely little to none. Only those manually stimulated.
*Ability to handle stress–Completely gone since crashing. No changes.
*Overall mood–Takes a big hit when going from healthy and happy to having a lot of problems literally overnight.
Marginal Improvements
*Memory Loss, Stumbling Over Words–Related to brain fog and my confidence in myself. I definitely feel that my brain has adjusted to the fog in a way that has allowed me to be more functional than I once was originally.
*Erectile Dysfunction–Might have improved marginally since originally crashing. Able to perform.
*Sperm Quality and Amount–Might have improved marginally since crashing. Might be infertile.
*Apathy, Lack of Motivation --Improved with acceptance of my condition and perhaps with a stabilizing of my hormones and neurosteroids after the initial 3-4 months of true hell that I experienced (crash). Still not close to the motivation and ambition I had before. Perhaps 50% of that. At this point I feel motivated more than anything else to beat this shit condition.
Slight Improvements
*Depression and Anxiety–Heavy improvements from the hardcore neurosteroid/hormonal crash that occurred when I initially quit Propecia. This also lasted for a good 3-4 months and took a long time to get a handle on.
*Fatigue–Improved from maybe an 80yr old’s energy–once again for 3-4 months of crash–to maybe a 35-40yr old’s energy. Bearing in mind my physical body is quite athletic and lean, so perhaps this is contributing to why I’m not worse off.
Recovered
*None
Current Regimen
*Topical testosterone–Androgel
Future Plans
*Try HGH or HGH peptides
Points of Interest (now and since last update at 9 months off)
*Returned from China with a pretty decent semester and grades
*Total testosterone has increased to 670 from 480-500 initial crash. Free test has remained the same (very low). SHBG has risen. Estrogen is the same.
*Tried Wellbutrin (June) with no success
*Have been applying 50mg Androgel daily for about a month
*Androgenic effects from Androgel ONLY (body hair growth, sweat, thicker skin), no anabolic or sexual effects
*Looking towards HGH or HGH peptides as possible treatment (at least for muscle loss, energy, and libido), doubt it’s effects on the rest of my symptoms
*Jacking off 3-4x/week on avg
*Body has lost about 10lbs of muscle in one year of PFS. Body fat has risen from 10% to 15%.
*Busy working internship and taking summer classes
*Trying to get a boost from some sort of treatment before next semester
Executive Summary
So I didn’t update for a couple of months because the longer I’ve had PFS, the more I realize how little things have changed. Despite listing improvements above, they have all been small and in regards to problems that are quite trivial in importances to me. For the more severe side effects: brain fog, muscle atrophy and bodily changes–nothing has really changed, and this bothers me tremendously. My quality of life is still a 3-4/10, the same as it was in my initial months of crashing.
The only things that have truly changed since coming off Propecia include slight improvements in depression, anxiety, fatigue, and apathy–all things that I believe are linked to the devastating hormonal/neurosteroid crash that my body experienced. Aside from these improvements that occurred about 3-4 months off Propecia, I have been quite stable in my PFS symptoms–nothing has improved, nothing has gotten worse. I definitely recognize the luck I’ve had with sort of weathering some of the bad sides, having slight improvements in some of the more debilitating symptoms, however, by no means am I even 50% cured. I still have many severe problems that appear untreatable and relentless, and as a smart user and kind friend of mine, MerryChristmas, has once recalled, “good remedies are hard to find.”
Now, I’m largely looking forward to the future for improvements, hoping time will heal my problems. I’ve seen over the past year that drugs have done very little for my condition, trying klonopin, ambien, clomid, arimidex, xyrem, gabapentin, testosterone gel, wellbutrin, adderall, modafinil, t3, cortef and a variety of supplements in attempts to improve various side effects. It still amazes me that less than a week of Propecia, a cosmetic drug, could do this to me, whereas months on other stronger drugs have had literally no impact on the way I feel.
As I’ve stated before, I’ve tried my best to continue on with my life, and I will continue to try. Hopefully improvements will someday be in my future.
He is one of the guys from brazil he has a blog on solvepfs, cant think of his avatar name.
Update: Started Growth Hormone
I’m not too expecting of this as nothing else has done anything for my symptoms (including the elusive and coveted Xyrem–seems like everyone on this forum thinks it’s the cure–it’s not).
I’m doing a very low dose under doctor supervision. Will update with any changes.
[Size=4]TWO YEARS OFF PROPECIA[/size]
104 Weeks off Propecia
Updating this for reference. 0 being horrible 10 being prefin
EVERYTHING THAT FOLLOWS IN RELATION TO INITIAL CRASH
Not many changes since last year’s update, unfortunately.
Sexual
[x ] Loss of Libido / Sex Drive 3-4/10 Marginal improvements here?
[x ] Erectile Dysfunction 7.5/10 Steadily holding the same
[ ] Complete Impotence
[ ] Loss of Morning Erections
[x ] Loss of Spontaneous Erections 3/10 No changes; I notice I get these with REM sleep, however
[ ] Loss of Nocturnal Erections
[ ] Watery Ejaculate
[x ] Reduced Ejaculate 7/10 About the same as last year, definitely not where I should be
[ ] Inability to Ejaculate / Orgasm
[ ] Reduced Sperm Count / Motility
Mental
[X] Emotional Blunting / Emotionally Flat 5/10 Pretty much the same, unfortunately
[X ] Difficulty Focusing / Concentrating 5/10 Debilitating brain fog. 5/10 (read that I feel 50% conscious) The same.
[ ] Confusion
[x ] Memory Loss / Forgetfullness 7/10 Same as last year
[x ] Stumbling over Words / Losing Train of Thought 8/10 Same as last year
[ ] Slurring of Speech
[X ] Lack of Motivation / Feeling Passive / Complacency 5/10 Same as last year
[ ] Extreme Anxiety / Panic Attacks
[x ] Severe Depression / Melancholy 6-7/10 Situational depression at this point, largely stemming from dealing with PFS
[x ] Suicidal Thoughts 8/10 Still holding strong at improvements from last year
Physical
[x ] Penile Tissue Changes (narrowing, shrinkage, wrinkled) 5/10 The same. Still shrunken. Looks semi normal ever so often
[ ] Penis curvature / rotation on axis
[ ] Testicular Pain
[x ] Testicular Shrinkage / Loss of Fullness 7/10 The same. Fluctuates but never Pre-PFS
[ ] Genital numbness / sensitivity decrease
[ ] Weight Gain
[ ] Gynecomastia (male breasts)
[X] Muscle Wastage 4/10 The rate has been a constant loss since quitting. The same. Body changes are pretty apparent
[x ] Muscle Weakness 4/10 A constant decrease in strength correlated to how much muscle I have. The same.
[X ] Joint Pain Just clicking, probably related to muscle loss. The same.
[X ] Dry / Dark Circles 7/10 Probably caused by minoxidil, but definite stress changes to face. The same.
Misc
[ ] Prostate pain
[x] Persistent Fatigue / Exhaustion 6/10 The same as last year
[ ] Stomach Pains / Digestion Problems
[ ] Constipation / “Poo Pellets”
[x ] Vision - Acuity Decrease / Blurriness Weird haze related to brain fog. The same as last year
[x ] Increased hair loss Stable rate since crashing. Starting to think this may be PFS related due to loss on sides of head
[ ] Frequent urination
[X ] Lowered body temperature Hands and extremities are cold all the time. The same as last year. So annoying
[ ] Other (please explain
Things Tried Since Last Update
*HGH - didn’t do anything
*DHT cream - didn’t do anything
*Progesterone cream - tried again but didn’t do anything
Current Regimen
*Low dose naltrexone (LDN) - currently not doing anything; causing fatigue and tiredness as side effects
Future Plans
*No idea, perhaps find a super low dose 5ar inhbitor to try and jumpstart DHT production (saw palmetto?)
Points of Interest and Thoughts
*Testosterone still in the mid 500s, not where it should be for my age and different from where it was pre-PFS
*Estrogen and other blood tests seem normal
*DHT still extremely low (bottom of the range), still no converting properly?
*5ar might not be functioning properly?
*Tried low dose naltrexone (LDN) in hopes of fixing immune system and boosting endorphins - no benefits so far
*Body changes and muscle loss becoming visibly apparent; still popping joints, weak/loose tendons, low body temperature, soft muscles
Executive Summary
Don’t really want to spend too much time writing here. The executive summary is that there haven’t been many changes since last year, and I am more or less the same. No improvements and no real worsening. I do feel like my brain fog is getting worse at times, but it hasn’t affected my ability to work/think any differently than when I first got PFS, so until that happens, I try my best not to worry about it. Body changes are still an issue and very frightening as I look towards the future. Sexual issues are annoying but manageable.
Quality of life is now a 4-5/10 versus a 3-4/10 when I first came off propecia. This is largely due to acceptance of my immediate situation. I look forward to more studies being conducted, and I am hopeful that some day in the future we will have a better understanding of what went wrong (and perhaps a treatment will exist).
I will continue to look for/experiment with treatments and keep the forum updated.
Thanks for the update. Was your IgE high?
Haven’t had IgE tested. Decided to take LDN due to good benefits from MS/FM patients, mixed benefits from PFSers, and the assumption that my problem might have been autoimmune related. Boosted endorphins couldn’t hurt as well. Unfortunately LDN has not done much (nothing) to help so far…
It is worth a try anyway. Do you have the CFS crimson crescents? Seems most PFS guys do.
I have asked a number of guys about their IgE results, some are listed here but I think in total 10 people have tested and more than 50% are over range.
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his condition sounds identical to mine
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Likewise - he did an amazing job of describing it. I reached out 6 months ago when If first crashed and he said no change still.
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Hey Mcbbould and all – literally was just reading over my old thread – haven’t looked at it in forever. I’m still active in reading posts on this site but have stayed away from looking at my own thread as it hurts too much (I’m sure you all know what I’m talking about).
Like many, nothing has changed for me and my condition over the past 3+ years. I was very hopeful initially, and I managed to update this thread over the first couple of years (last post was probably around August '17). Unfortunately however, I have not improved. I have tried many things as outlined in this thread, but once again like many, life eventually caught up to me and I realized I needed to take time away from fighting this illness. I’ve managed to somewhat accept my condition and “move on” (in a sense) with my life – this is not to mean that I don’t suffer. I still suffer just as much as I did when I first came off finasteride – I’ve just sucked it up as much as possible and now try to live my life as best as I can.
Being the youngest on this forum when I was first hit with PFS (19) and KNOWING I was the youngest really took a toll on me. I was angry that I got hit with such severe sides while many others only had sexual side effects. I now understand that we’re all suffering, regardless of side effect profile or severity. For anyone who is young and new to the forum, I wish you the best. Hopefully your sides will not last long, but if they do, I’ll give the same advice that most other senior members of this forum have given me – hang in there. It may or may not get better (in my opinion, it probably won’t). But even if it doesn’t, get better you WILL learn to adapt and accept your new life. It is a horrible thing to “give in” and accept, but in my case at least, it is still better than death.
I keep hope alive that one day the studies will find something, or that I will truly find myself accepting the condition somewhere down the line. Until then, I’m just continuing on with my life as best as possible. Thanks again to those on the forum who have helped me along the way; you know who you are.
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Thanks for checking in, @plzrecover, so many people just disappear.
I’m glad to hear that you’re grabbing hold of life and getting the most out of it.
Have you taken part in our 23&Me project?
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Hey Greek. I agree; I was always freaked out by not seeing old posters post when I first joined the site. To anyone who is concerned we disappeared – nope, most of us are still here as silent participants, haha (you can probably check when people are last active which is a good feature).
I haven’t taken part in the 23&Me project yet. I need to at some point (missed that killer Black Friday sale). I have donated a substantial amount to the foundation though, and I suggest others to do the same (though I won’t shove that down your throat like some members here cough cough).
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The 23 and me Is still on offer for Christmas buddy, and it’s currently $69. It would be great if your able to help with this as we need as many samples as we can get and just imagine if we actually find something through this. Thanks for donating to the foundation.
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