12 years - my story

Member Stories
#1
  1. Where are you from (country)?

USA

  1. 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

  1. What is your current age, height, weight?

33
5’10’’ 185

  1. Do you excercise regularly? If so, what type of excercise?

Yes, weight & interval training

  1. What type of diet do you eat (vegetarian, meat eater, raw, fast-food/organic healthy)?

Balanced, healthy.

  1. Why did you take Finasteride (hair loss, BPH, other)?

Hair

  1. For how long did you take Finasteride (weeks/months/years)?

12 years

  1. How old were you, and WHEN (date) did you start Finasteride?

21

  1. How old were you when you quit, and WHEN (date) did you quit?

33

  1. How did you quit (cold turkey or taper off)?

Taper - 0.5mg down to <.1mg over 2 months.

  1. What type of Finasteride did you use – Propecia, Proscar, Fincar or other generic?

Propecia

  1. What dose did you take (eg. 1 mg/day, 1 mg every other day etc.)?

0.5mg

  1. How long into your use of Finasteride did you notice the onset of side effects?

Some after 5 years; some after 10 years

  1. What side effects did you experience while on the drug that have yet to resolve since discontinuation?

Intermittent brain fog. Libido generally OK but lower than I feel it should be. Dry eyes. Changes in testicular volume. Large fluctuations in libido.

Put an X beside all that apply:

Sexual
[x] Loss of Libido / Sex Drive
[ ] Erectile Dysfunction
[ ] Complete Impotence
[x] Loss of Morning Erections
[x ] Loss of Spontaneous Erections
[x ] Loss of Nocturnal Erections
[x ] Watery Ejaculate
[x ] Reduced Ejaculate
[ ] Inability to Ejaculate / Orgasm
[ ] Reduced Sperm Count / Motility

Mental
[ ] Emotional Blunting / Emotionally Flat
[x ] Difficulty Focusing / Concentrating
[x ] Confusion
[ ] Memory Loss / Forgetfullness
[ ] Stumbling over Words / Losing Train of Thought
[ ] Slurring of Speech
[ ] Lack of Motivation / Feeling Passive / Complacency
[ ] Extreme Anxiety / Panic Attacks
[ ] Depression / Melancholy

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)
[ ] Muscle Wastage
[ ] Muscle Weakness
[ ] Joint Pain
[ ] Dry / Dark Circles under eyes

Misc
[ x] Prostate pain
[ ] Persistent Fatigue / Exhaustion
[ ] Stomach Pains / Digestion Problems
[ ] Constipation / “Poo Pellets”
[ ] Vision - Acuity Decrease / Blurriness
[ ] Increased hair loss
[ ] Frequent urination
[ ] Lowered body temperature

[x ] Other (please explain)

Dry eyes

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

None

  1. 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)?

In progress…

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

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

I don’t qualify as an extreme sufferer but finasteride has affected my life nonetheless. This forum has been very helpful. As I have been posting more frequently I thought it would be good to share my story so far.

I started taking Propecia at 21. I had immediate ball ache so I cut the dose to 0.5mg and stayed with that dosage. I probably should have been bald by 23 given genetics and the rate of my hair loss but Propecia kept me from losing hair.

About 5 years into treatment I developed dry eyes. They were also sensitive to light/wind at times. I saw an opthalmologist who said it could be from finasteride. I was able to manage by simply using liquid tears so I stayed on the drug. Around that same time I had a period of about 2 years where I had night sweats quite frequently - no way to know if that was Fin-related.

Around 2 years ago I noticed that I lost morning/nocturnal/spontaneous erections but honestly didn’t think too much of it. I figured it was “getting older.” Truth is, I was trying to ignore it as everything worked OK when needed. I did have a growing suspicion that my libido was lower than it should be and that recovery from sex was longer than it should be but I wasn’t overly concerned. I have also noticed that my ability to concentrate has decreased markedly over the past few years but I still dont know if that is due to Fin or just a result of my job as a trader, which reinforces my short attention span.

Then about 8 months ago, I missed 5 days of doses. By the fifth day I was having sexual dreams (very unusual for me) and morning erections. That proved to me that Fin was having an effect. I was getting married in a month so I didn’t want to quit and lose my hair. I resumed taking Fin and immediately developed brain fog. Further, I was able to recall having that same feeling several times over the prior year for 1-2 days at a time. At the time I had no idea what it was - it was alarming but it always went away fairly quickly. It was now clear that Fin was somehow the culprit. “Brain fog” is a very distinct feeling for me - I either have it or I don’t. It is not a made up symptom. I am still alert when i have brain fog but I feel like I have had 2 glasses of wine all day (minus the happy feeling). Unfortunately, the fog lasted several months this time. Upon resuming Fin I also developed ball ache, some prostate pain, and numbness in my penis (but could still function albeit with less pleasure).

I made appointments with my GP and urologist. My GP said that it was all in my head, that I had nice hair, and that I should stay on the drug. My urologist said I was probably having nocturnal erections and just didn’t know it (not true). He also examined my prostate and said it was the size of a transexual’s on feminizing hormones. But he wasn’t too worried and also said that as long as I can perform I should stay on the drug.

All my symptoms cleared up except for the brain fog - that was becoming a big issue and had now persisted for a month. I went to see neuroendocrinologist Alan Jacobs in addition to doing my own research. I didn’t quit the drug right away as I wanted to research things and make a plan to taper off the drug. After about 3 months my brain fog just disappeared one day (oddly, after a weekend of heavy drinking). However, I stuck with my decision to quit the drug (risking cognitive issues seems dangerous to me) and spent Jan-March tapering off.

The tapering off experience was interesting. Each time I dropped the dose I would have 1-3 days of morning erections and high energy levels. I would then go immediately back to feeling “normal.” As you’ll see in my blood my DHT did not change however, suggesting that the dose response is very small.

Since fully quitting two months ago I have been on a bit of a roller coaster. I had several weeks of ball and thigh ache (painful enough to make sleeping uncomfortable). I’ve had intermittent hot flashes, fatigue, and nipple sensitivity. I’ve had days where my testicles are full and high and days where they are 2/3 the size and hang low (the general pattern is normal upon waking and then shrunken by night). My libido has fluctuated from normal to non-existent. My ability to tolerate alchohol has dramatically declined - anything more than a few drinks and my nipples get sensitive, testicles shrink & ache for a few days. Worst of all, my brain fog came back about a week ago (with about half the intensity of the episode I had this past fall). On the plus side, nocturnal/morning erections have returned, I am dreaming again (rarely while on Fin), and I think I lost some bodyfat around my mid section. My hair is rapidly falling out.

As an aside, the one thing that I have noticed that makes me feel significantly better over the past few years has been intense sexual encounters. For several days afterwards I have greater energy, feel a much stronger mental connection with my penis, and get erections much easier. After about 3 days I go back to “normal.” If I go over 10 days without intense sex I start to feel the opposite.

Thanks to this forum I knew to have blood work done before I quit - I will post it shortly. The immediate plan is to give things another month or two, draw more blood and then evaluate things from there. Please review my bloodwork when I post it and let me know if you have any ideas.

TMag member
#2

I have similar story - almost 14 years of use. Stopped 3 months ago.

How is your recovery - have you made a full recovery yet?

How was your hairloss? When did it start and how aggresive was it?

#3

So i have now been off the drug just about 2 years.

I have noticed the following:

  1. Hair has steadily fallen out. I would say that I have now lost 50% of my hair - quite stressful. At this rate I will be shaving my head down to skin within a year.
  2. My body hair is growing much more rapidly.
  3. I now get nocturnal erections almost every night. I do think this is important to “feeling like a man.” It is nice to have them back. Early on I was getting them about 1x per week and this has gradually increased to almost every night. I still do not get spontaneous erections during the day. On Fin, i hadn’t had either for at least a few years.
  4. My mind does feel sharper. Brain fog is gone. It took a few months to clear up. It’s a bit odd…it actually got worse when I quit and then after 3 months basically disappeared one day. It seems like your system needs to “reset.”
  5. I dream again…on Fin I rarely had dreams. This makes me feel more “human.” I even have the occasional erotic dream which hadn’t happened in 12 years on fin.
  6. I can’t really judge libido. It doesn’t feel much different but I am going through some difficult times in my relationship so it is very hard to judge.
  7. My body is now super-sensitive to anti-androgens. Even topical spiro gives me sensitive nipples within a few days and, in theory, this has no systemic effects.
#4

Yeah thats what I thought… getting older. Some docs even believe this crap… fact is it shouldn’t happen till your in your late 60’s, 70’s.

My dad who is 58 still gets morning wood… most days. Yet his 28 year old son (me) who took fin for 3 months didn’t get them for almost 6 years… not a single morning erection until I lowered my cortisol. And even now I only get them sometimes.

#5

I totally agree. I have so many friends who have some degree of sexual dysfunction in their 30s (who are otherwise healthy) and chalk it up to getting older, not propecia. When side effects are gradual they often go unnoticed or are not attributed to the drug. I am a great example that this side effect is definitively not age-related…i literally went from not having a nocturnal erection for about 4 years to now having them 90% of nights.

Now, I guess a second question is whether nocturnal erections matter, if function is OK when you need it. It definitely has a nice psychological effect and I have to think that fresh blood flow every night helps keep it healthy. However, my urologist didn’t seem to think it was a huge deal (he also didn’t believe that propecia was affecting nocturnal erections so he is clearly capable of being very wrong).

#6

You are very lucky to have recovered to such a extent without having to reorganize your endocrine system with more drugs.

I too have 5 or 6 friends who I don’t keep in contact with who still probably use the drug. Hopefully they wake up before its too late. The one friend who I still talk to who was using it wasn’t experiencing side effects but when I told him what happened to me he stopped immediately.

#7

Friends that took propecia? how many of them do you know? you should show them this website

When i hear this kind of stuff it reminds me of how potentially many thousands, possibly even millions of men that have taken this drug, suffer sexual problems because of it and do not even realise. For me it is night and day, i experienced a very aggressive crash overnight but i am sure that if symptoms came on gradually i would have no idea what was happening and probably believe my parents and doctors who say that it is anxiety, or growing out of my teens. Same case with Accutane and Anti Depressants .

#8

I live in the ultra-competitive dating world of NYC. Truth is, many of my friends would rather have hair than nocturnal erections and full mental clarity. I might even agree if sides never escalated, but in my case they did and I personally believe that will continue all the way through life.

#9

Yeah for me there was no doubt either that crash was like nothing I have ever experienced. Or heard of.

#10

Would like to give you guys another small update and hopefully give you all some hope (keep in mind my sexual sides were never that bad).

I had no nocturnal or spontaneous erections for my last 4-5 years on fin (took drug 12 years total). Upon quitting i got a few nocturnal erections at first then they seemed to disappear again. About 6 months in I was having them 1-2x per week. About 12 months that was 2-3x. Now at the 2 year mark I would say it is 5-6x per week. Plus, they happen throughout the night.

Just in the last week I have notice what feels like the early signs of spontaneous erections. I have always been able to admire a hot girl but didn’t feel anything downstairs until some physical contact actually started. In the past week or two i’ve noticed a few instances where a naughty thought or a pretty girl will start to get things moving…not full blown erection but at least some movement. This is a pretty cool experience when you’ve gone so long without it.

No particular strategy for recovery…just time and living healthy in general. I have noticed that moderate/heavy alcohol consumption will eliminate nocturnal erections for a night or two.

#11

My case is similar to yours… similar numbers, i even used your first post as a template, check it out!

I believe Finasteride puts the body into such a pressure that you have to be very healthy to overcome it. I also believe time will cure, specially if you are healthy, and brain will figured it out. I’m trying to eat more healthy foods now, vitamins and all that, and working out more despite the fatigue.

Do you happen to remember if anything changed in your life during the time you encountered the side effects? Because in my case it was when I switched to an unhealthy lifestyle, read my case.

#12

I found an interesting user story on Tmag…

tnation.tmuscle.com/free_online_ … onotherapy

#13

Similarly:

tnation.tmuscle.com/free_online_ … x_steroids

tnation.tmuscle.com/free_online_ … perm_count