Long-term user - success but side-effects starting to worry me

Hi, I’ve been using Proscar for about 8 years, with great results but many (mild) side-effects - and a more recent one that is scary! Story below…

1) How did you find this forum? Google

2) What is your current age, height, weight? 44, 5’10 1/2", ? (thin, though :slight_smile:)

3) Do you excercise regularly? Moderate - just regular walking

4) What type of diet do you eat? Very little red meat, a lot of cereals, fruit and vegetables, pasta, chicken, fish, eggs (plus occasional junk food).

5) Why did you take Finasteride (hair loss, BPH, other)? Hair loss, but the reduced libido and anxiety were also positive bonuses.

6) For how long did you take Finasteride (weeks/months/years)? About 8 years now.

7) How old were you when you started Finasteride? Around 36.

8) How old were you when you quit? I’ve taken short breaks and am about to embark on another one. Whenever I take a break I experience significant hair loss :frowning:.

9) How did you quit (cold turkey or taper off)? Tapered off carefully - alternated days and reduced dose, and took Zinc to block symptoms such as nipple tenderness.

10) What type of Finasteride did you use – Propecia, Proscar, Fincar or other generic? Generic Finast bought over the Internet - two different brands, depending on availability.

11) What dose did you take (eg. 1 mg/day, 1 mg every other day etc.)? .8 to 1 mg for 4 days, then one day off, then 4 days on, etc.

12) How long into your use of Finasteride did you notice the onset of side effects? In the first week or so, some testicular pain, then an initial burst of testosterone (good time to exercise) in the first few weeks, then settled in to the usual long-term side-effects. Nipple tenderness and slight breast swelling is experienced when I take breaks, but does subside.

13) What side effects did you experience while on the drug that have yet to resolve since discontinuation? I haven’t discontinued, but have taken breaks in the past. After 1-2 weeks, my libido returns. Hairloss is experience almost immediately.

Put an X beside all that apply:

Sexual
[x] Loss of Libido / Sex Drive
[x] Erectile Dysfunction (overnight, but still okay when I need it)
[ ] 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
[x] Emotional Blunting / Emotionally Flat (I find this a bonus at times)
[x] Difficulty Focusing / Concentrating
[x] Confusion
[x] Memory Loss / Forgetfullness
[ ] Stumbling over Words / Losing Train of Thought
[ ] Slurring of Speech
[x] Lack of Motivation / Feeling Passive / Complacency
[ ] Extreme Anxiety / Panic Attacks (I suffered this before, but it actually helped with this one)
[x] Depression / Melancholy

Physical
[ ] Penile Tissue Changes (narrowing, shrinkage, wrinkled)
[ ] Penis curvature / rotation on axis
[x] Testicular Pain
[x] Testicular Shrinkage / Loss of Fullness (definitely!)
[x] Genital numbness / sensitivity decrease (again, not when it matters)
[x] Weight Gain (seem to get bodyfat more easily)
[x] Gynecomastia (slight occurence on reducing dosage, but subsides)
[x] Muscle Wastage (possibly, but skinny to begin with)
[ ] Muscle Weakness
[x] Joint Pain (knees most of all)
[ ] Dry / Dark Circles under eyes

Misc
[ ] Prostate pain
[x] Persistent Fatigue / Exhaustion
[x] Stomach Pains / Digestion Problems
[x] Constipation / “Poo Pellets”
[x] Vision - Acuity Decrease / Blurriness (increased floaters in eyes?)
[ ] Increased hair loss (a little initially, then great success)
[ ] Frequent urination
[x] Lowered body temperature

[x] Other (please explain) Low blood pressure. Recent breathlessness, tightness and feeling of cramping in the chest - possible angina caused by low blood pressure? I can’t seem to get my pulse up when exercising lately. The worst chest pain episodes have been nearly two years apart, but I often feel like it could happen. Indigestion also, which seems related to the breathlessness.

14) What (if any) treatments have you undertaken to recover from your side effects since discontinuation of the drug? On my cyclic day off (every fifth day) I take Zinc, which does help block the breast sensitivity. I’ve also taken l-arginine at times in the past, and it’s good stuff, but you’ve got to know the occasion is there in advance :slight_smile:.

15) 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)? The only blood tests I’ve had (while on it), showed high cholesterol.

16) Anything not listed in the above questions you’d like to share about your experience with Finasteride? The hair maintenance has been fantastic - it reversed balding just slightly initially and, for nearly a decade, it has maintained exactly the same hair distribution, only thicker. I was willing to put up with most side-effects for this result, but the chest pain episodes really scare me!

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

That pretty much covers it. I’ve used generic Finast by cutting 5mg Proscar tablets into 5 or 6 parts. I take one piece for 4 days, then have a day off to allow my body to recover a little (and this has no effect on hair gain). I’ve experienced changed libido, overnight erections, etc. However, I have found this a boon in many respects - I’m married and still have great sex when it’s on offer, but feel less frustrated the rest of the time - seriously :slight_smile:. This recovers quickly if I take a break.

I also got onto Proscar coming out of depression, and it worked better than anti-depressants in making me feel less anxious. However, I do feel lethargic, to the point of getting positively reptilian and feeling like I don’t want to do anything. I also have lowered blood pressure. I suffer breathlessness, indigestion and general chest pain, including two really frightening episodes of chest constriction, which I suspect are angina caused by extreme low blood pressure. Working at a desk all day I feel increasingly lethargic (and foggy), but exercise helps alleviate this.

I’m taking another short break, but feel really conflicted. Proscar has kept my hair this long, but at what cost?

Thanks for this forum, guys!

Hi all,

Here I am again, three years on and still using generic finasteride. For the last six months, I have been cutting the 5mg pills into six, and taking the pieces (at the same rate as I always have), four days on, one day off.

Recently, due to extreme “brain fog,” speech slurring, etc. I have dropped my dose down with the intention of possibly taking a break. I’ve been taking pills cut into eight pieces, three days on and one day off. My libido almost immediately increased (given that I’m long term married, that’s more a nuisance than a benefit), but the brain fog is actually worse! I appear to already be losing hair for the first time in years, so I have no doubts about the success of finasteride for preventing hairloss, but am amazed at how quickly the benefits can fall away.

I’ve been reading the Alex Miller posts and think his theories about the demyelinisation caused by long term finasteride use make a lot of sense. What’s shocking to me is that, after moderate (and the usual) side-effects all these years, this has mental incapacity has come on so recently!

I’d be interested to hear any opinions or similar experiences.

Updated list:

Put an X beside all that apply:

Sexual
[x] Loss of Libido / Sex Drive
[x] Erectile Dysfunction (overnight, but still okay when I need it)
[ ] 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
[x] Emotional Blunting / Emotionally Flat (I find this a bonus at times)
[x] Difficulty Focusing / Concentrating
[x] Confusion
[x] Memory Loss / Forgetfullness
[x] Stumbling over Words / Losing Train of Thought
[x] Slurring of Speech
[x] Lack of Motivation / Feeling Passive / Complacency
[x] Extreme Anxiety / Panic Attacks
[ ] Depression / Melancholy

Physical
[x] 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
[x] Weight Gain (without eating anything much!)
[x] Gynecomastia
[x] Muscle Wastage
[x] Muscle Weakness
[x] Joint Pain (knees most of all)
[ ] Dry / Dark Circles under eyes

Misc
[ ] Prostate pain
[x] Persistent Fatigue / Exhaustion
[x] Stomach Pains / Digestion Problems
[x] Constipation / “Poo Pellets”
[x] Vision - Acuity Decrease / Blurriness (increased floaters in eyes?)
[ ] Increased hair loss (a little initially, then great success)
[ ] Frequent urination
[x] Lowered body temperature

Hmm, some new additions to my list…

You have penile shrinkage (like me and many others) on top of everything else you’ve checked off and you are “possibly” considering a “break” from Finasteride?

Speechless here…

You’re on the wrong forum if you plan to continue the medication.

First of all this forum is only for men that quit the drug and continue to have problems.

You found this forum 3 years ago and knew the damage it was doing to your body, yet you continued to take it for another 3 years. Big deal your libido increased. What do you think the drug might be doing to your liver, kidneys, sex organs, etc. You listed dozens of serious side effects you still have, yet you still take the drug. I guess you will have no one to blame, but yourself for the damage you continue to do to yourself.

mixed_feelings: my feelings aren’t mixed. If you continue taking finasteride knowing the pain that the rest of us here have been experiencing you deserve to lose your penis.

Why would you value holding onto hair more than your health and sex life?

It blows my mind that there are people who come to this site and then still make the decision to take this drug.

For gods sake man it’s just hair! Wake up!

Not to mention he’s married too so who cares. He says, “loss of libido” was a positive outcome. lol

For some reason I’m doubting he’s experiencing all the sides he lists there to extent the rest of us are experiencing. I can’t imagine anyone intentionally doing that to themselves for EIGHT years.

You’re right, this probably is the wrong forum, but I don’t think a few posts every three years is excessive.

The dilemma for me is that finasteride does what its manufacturers claim: I have absolutely no doubt that I would be completely bald without this drug, and yet with it I have more hair now than when I started ten years ago. I’m not someone that is going to make an attractive bald guy, so I’m in no hurry.

Of course, you’re all correct that the side-effects are devastating, if variable, and I am shocked to find that there are actually cumulative issues with long-term usage (though it makes sense). I also think that everyone has side-effects on finasteride, which is something no medical person tells you!

What I am trying to do is add my experience to this pool of knowledge. I don’t have an agenda and I certainly don’t love finasteride, but the issue isn’t black and white considering how desparate people can feel at the onset of hairloss.

I was always wary about this drug. When I initially took it, I stuck solidly to the ongoing regime, but finding that my libido disappeared, and reading “alt.baldspot” made me realise that it wasn’t necessary to take such a high dose, and certainly not everyday, so I took a break and let my body sort itself out, then went onto the 4 day on, 1 off, low dose I’ve used ever since.

This is a very fair question. It’s stupid that I actually feel torn about it, but I do. I’d like to get off it but the alternative, as far as I can tell, is permanent baldness. From what I’ve heard, saw palmetto is actually worse!

FWIW, the penile shrinkage has never been an issue when it’s in use, just other times. Sorry, I made a typo: my libido DEcreased when I started, not increased (that would never happen with finast).

Lowering the dosage even further - not sure if I will take a break, or stop - has certainly got my libido going again almost immediately.

That’s a point for me: I believe when you do something like this, you are personally responsible for that decision, based on all the information you could gather at the time. I’m not going to sue anyone, although I think things need to change in relation to the way this drug is prescribed.

No-one should ever use finasteride on a solid, day in, day out basis. I would never trust Big Pharma about anything, but the gaps in information about this drug are gradually being filled in, and not by them!

My experience has been positive only in terms of hair retention.

Something else I’ve noticed: I think the long-term side effects may be worse for younger guys who start on this. I was in my late thirties when I started on finasteride, and had already had my children (which is another issue to consider for people planning to have them in future).

Well, if you are planning to stop the medication or “take a break”, beware of not quitting cold turkey, nearly everyone of us did that and look where we are now. Theoretically, even very low doses inhibit nearly the same amount of DHT but I’m not sure if it is so true.

I used to take a 5mg Proscar cut in 5, and when I decided to stop, I considered buying again Propecia, in order to cut the 1mg pill and slowly ween off. I had the choice between doing that during many, many months, or just quitting all of a sudden, thinking I would spare my prostate to be killed longer. A difficult choice, but I obviously made the wrong one.

Y-C, that is really good advice! I’m more scared of the potential side-effects of quitting than I ever was of finasteride itself. Before I started I read a lot of stuff about guys trying to quit various steroids and that aspect always concerned me, ie: hormones aromatising and fluctuating in an unpredictable way.

I have to say that I’ve been feeling weirder since lowering my dose and taking more frequent days off that I ever have while taking it on my usual 4 days on, 1 day off basis. Possibly, cutting smaller doses is less accurate, but it’s more than that.

The problem is feeling very up and down - better some of the time and then suddenly utterly exhausted for long periods. Returning libido, brain fog and eye disturbances are similar - sort of extremes - and increased hairloss, and this is just with lowering the dose.

The line between effective use and minimised side-effects must be a very fine one, and probably different according to each individual person’s hormonal profile, but I think the pluses and minuses are probably inextricably linked in terms of dosage.

I’m going to look up threads on how to get off, which seems to me a pretty important function of this site…

Read the doctor prescribing information for both propecia and proscar. Proscar suppresses dht by 70%, propecia by 65%. there is only a 5% difference here despite taking a 5 times greater amount of finasteride.

You are talking about a very fine line with very minimal amounts of the drug.

Thanks, MartinM - yes, I remember being astounded by the guys who were taking 5mg for so little extra return (in the days when we thought that suppression was totally positive). It probably means my .62 to .83 doses haven’t gained me much in terms of side-effects, although I’m hoping that, combined with my every fourth day off approach, I might be spared the worst of the post-finasteride syndrome.

I also think I’ve had a better run partly do to with being 37 or 38 when I started: I reckon it should at least be illegal to prescribe this to guys below a certain age.

I think it’s all due to age.