Just got off Propecia and already feeling the symptoms

Member Stories
#1

I was going to sleep but the pain on my lower left abdominal (above left testicle) is not letting me so I will do something useful and join the forum instead…

  1. How did you find this forum?
    Googled “Finasteride side effects”

  2. What is your current age, height, weight?
    31, 1.77m, 74 kgs

  3. Do you excercise regularly? If so, what type of excercise?
    Kick boxing which is very cardiovascular

  4. What type of diet do you eat (vegetarian, meat eater, raw, fast-food/organic healthy)?
    I try to be healthy in general, lots of salads and yes I do eat meat.

  5. Why did you take Finasteride (hair loss, BPH, other)?
    I was many years on Regaine solutions trying to keep my hair on my scalp and I was getting bored of the daily or second daily applications, but one day I saw a brilliant Boots (UK pharmacies) ad about “breaking the family tradition” and I decided to check it. After a quick consultation with the pharmacist I was told that there is a very low percentage of side effects and even if there are any they would go away after I stop… you know, the usual.

I also checked with my dermatologist back in Greece (the one who has originally prescribed Regain, and he told me it’s perfectly safe… so I decided to give it a go… so here I am.

FYI: As I found out just recently, apparently Boots has a special permission where they can sell Propecia without needing a prescription from a doctor, they just need their pharmacists to attend a special course or something. I didnt know it usually needs a prescription. I wish I had done a little more research before committing to this but I guess if you get happy news from doctors and Boots sells it over the counter, you dont expect it to be that bad!

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

  2. How old were you when you started Finasteride?
    30

  3. How old were you when you quit?
    31

  4. How did you quit (cold turkey or taper off)?
    I took 4 half doses and then decided to stop it completely.

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

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

  7. How long into your use of Finasteride did you notice the onset of side effects?
    I can’t say I saw many side effects while on the drug apart from watery ejaculate which I thought would be normal as I was told. Most of them have started after I stopped.

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

Put an X beside all that apply:

Sexual
[X] Loss of Libido / Sex Drive
[X] 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
[X] Emotional Blunting / Emotionally Flat
[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
[X] Depression / Melancholy

Physical
[X] Penile Tissue Changes (narrowing, shrinkage, wrinkled)
[ ] Penis curvature / rotation on axis
[X] Testicular Pain
[ ] Testicular Shrinkage / Loss of Fullness
[ ] Genital numbness / sensitivity decrease
[ ] Weight Gain
[ ] Gynecomastia (male breasts)
[ ] Muscle Wastage
[ ] Muscle Weakness
[ ] Joint Pain
[X] Dry / Dark Circles under eyes

Misc
[X] Prostate pain
[X] 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)

  1. What (if any) treatments have you undertaken to recover from your side effects since discontinuation of the drug?
    Not yet, I wait to see what will happen… (drum beat!)

  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)?

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

  4. Tell us your story, in your own words, about your Finasteride usage and side effects experienced while on/off the drug.
    Well… I thought I was alright while on the drug, apart from the watery ejaculate thing. My sex drive was normal and I was having sex regularly with my girlfriend. One thing I have noticed is the wrinkling of my pinnace but I didn’t think it was something to worry about as I have done some STD tests and they were clean.

Also, I had noticed that I was feeling a bit tired and having difficulty concentrating but I thought this was just due to lack of sleep (but I can’t blame this to the drug as I never used to go to bed early).

However, the next day after I stopped taking it completely (as I said before I phased it over 4 days - which probably didn’t do any difference), it was like hell broke loose for me… I had the worst fit of depression I ever had. It was last Sunday and to make things even worse the girl I am seeing decided it was the perfect day to have a talk about our relationship which obviously didn’t help at all! I explained her the problem I thought I was facing and although in the beginning she found it hard to believe she eventually tried to support me. This helped and by night I was feeling better (or maybe my hormones started going back to normal). The same night we had sex, but I had difficulties getting it up and when I did it was not very hard, but I eventually came.

The same night as I was trying to sleep I felt a small pain coming from below left. I eventually slept but today I can still feel it through the day. I thought it would get better but it’s not. Now I have taken an Ibuprofen of 200mg hoping it will do something but unfortunately the pain is still there an hour after I’ve taken it so I haven’t got high expectations for the rest of the night…

I haven’t had any morning erection which scared me a little bit but I will give it some time. I havent tried to see whether it still works as I fear I will make it worse if I try, but during the day I havent had any erection or even the idea of an erection.

What I have to add is that my father has had prostate and my mother breast cancer and they both had to cut something off (you can guess who, what) so all this ordeal makes it even more scary to me in case I have a predisposition for any of the two… but on the other hand I feel as close to my father as I have ever been! I can just barely start to feel how he must have felt after he had the surgery…

Ahhh… the pains of vanity? Probably, but at least we should have been explained the risks properly. Well, I will keep you posted on news from my front.

#2

Ok, today there’s no much pain any more but still no morning erection. It’s only day 3 since I stopped taking the pill but I’m wondering whether I should have waned off it. Considering it’s not long since I stopped it I wonder whether I should I go back to let’s say a quarter of the size (0.25mg) and then slowly get off it in a period of 2 weeks?

I did have that crash though on Sunday so not sure if it would be wise to destabilise my body again… I feel like a guinea pig.

#3

Just i case anyone is interested, Propecia’s marketing case study: hbswk.hbs.edu/item/4503.html

#4

if its only been three days just relax - it may take a month or two to get back to normal.

#5

Do you have any anti-anxiety medications? I stopped a few crashes by taking a klonopin, it can lessen the effect greatly.

I felt like absolute shit for a few months. Hopefully you’ll recover in due time, try to get good sleep, you’ll heal better that way.

Be careful about speedy recoveries after a week or so, because it might be brief, you could end up crashing again. Nervous breakdowns, depression - anxiety medication will help that.

Hope you recover 100% mate.

#6

Hi all and thank you for your replies.

It’s almost 2 weeks now and this is what I have to report:

A few days (3-4) after the crash I’ve noticed a few week morning erections. I’ve also tried having sex with my girlfriend but again, weak erection. At the same time I had trouble sleeping due to a lower abdominal pain moving from above my left testicle to my prostate and back. One night I even had to take a pain killer to go to sleep.

After this I decided to go over to Boots (the pharmacy which sells Propecia in UK) to complain. The pharmacist told me that this was the first case she knew that the side effects appeared after someone had stopped Propecia. She also told me that the side effects list has changed and that they were going to inform me at the next consultation. She then referenced me to my GP for my problems, at which point I asked her whether that’s how Boots ‘washes its hands of it’. What she told me made me understand that if the problem is confirmed by the GP then Boots will be involved again - but not that I expect anything from them anyway…

Anyway, I booked an appointment with the GP but by the time of the appointment (8 days after the crash) the pain had gone (lasted for a week - gradually fading away). I explained him the problem of which he was sceptical, but I eased his scepticism when I informed him of Merck’s change to Propecia’s side effects list to include permanent ED - something which he didn’t seem to know.

To make a long story short, he gave me a list of hormone tests to have on September (one month since I stopped the pill) to give my body enough time to flush out the drug. These are:
FSH
LH
Testosterone
and ticked a tickbox called ‘Thyroid function’ which might include more tests

-Anyone thinks these tests are enough or not? I gave my GP the forum’s list but he didn’t want to consider them.

Anyway, it’s now 13 days since I stopped the pill completely and I’m waiting to see whether I will fall on this “2 weeks crash” or not. So far I have seen the following improvements in my situation:
The pain has stopped
I have had some strong morning erections
I am having normal sex with my gf, some times more than once
I haven’t had another depression fit
Fuzziness seems to have been reduced
Less watery ejaculation
Penis head wrinkling seems to have gone

However, I still have the problem that when I try to masturbate I get a weak erection, or when I am with my gf I lose my erection fairly quickly if I don’t enter her straight away.

All of the above make me think there might be a combination of stress and abnormal hormonal levels, so I guess my best bet is to give it a it more time and see what the hormone results are going to come up with.

-Any advice to the above would be appreciated.

Thanks.

#7

Awwww… the paaaiiinn… it’s 2 weeks and a day since I stopped it and i can feel a 2nd crash settling in… it’s not as bad as the first one 2 weeks ago but it definitely feels bad and I think it seems to last longer than before.

No energy for nothing, a headache and -of course- no sex drive. It’s 3 days before my holidays, I should be feeling top notch and ready but nooo… Come on Body! Fight this! Get back to normal! I’ll do some kick boxing sparring today to see if that’s going to put me back straight… maybe a punch or two will bring my head back to normal! :stuck_out_tongue_winking_eye:

I will also try increasing the cauliflower and broccoli in my diet, I’ve read somewhere in here that they help with sorting the hormones out… But what makes me even angrier is that we all have ended up talking about our hormones like ladies in their 50’s going through their menopause! That’s what we are reduced to! Grrrr!! :imp:

:neutral_face:

#8

I think your symptoms are just fluctuating a bit as your body adjusts to being off the drug. I would take it easy and stay away from this site for a couple of months. Odds are you’re going to be fine.

#9

:slight_smile: Good advice. Truth is that since yesterday I have started feeling better again which is good but the whole fluctuation thing is annoying. Well… I’m off on holidays anyway so I’ll see how things are after that. Take care.

#10

Get a TSH, Total T3, Total T4 and Reverse T3 test done on your blood tests if you can. Also try to ask for Thyroid Peroxidase Antibodies, if it’s higher than 35 IU/mL that means you have an autoimmune disease attacking your thyroid. That would explain most if not all of your mental problems.

#11

Dury thanks I will make a note for when I go for another test.

Ok, here’s my update:

Second half of August I went back to Greece for some long awaited holidays. The holidays were excellent, not very relaxing I must say but definitely fulfilling. I believe that my good psychological condition during the holidays along with good food has helped me get better and good erections started coming towards the last week of Aug (2nd week of holidays) and beginning of Sept (after I had come back).

But what I also think has helped (no laughs now!) is the fact the average temp was from 33oC to 40oC. What this means (I think) is my metabolism was working in overdrive and I can tell because in UK I go to the toilet (for a no.2) only once or twice a day, in Greece I was there 3-4 times per day (and no I wasn’t eating junk) which means that what I ate was becoming waste much much faster than here. I know it sounds anecdotal (or an anecdote, depends how seriously you want to look at it) but that’s what I thought. I don’t know if higher temps make the metabolism faster or slower but that’s how I explained it.

Anyway, when I came back I was much better, getting a good erection was the norm for a a few weeks. As soon as I came back, beginning of September (more than a month after I stopped Propecia) I went and did the blood tests my GP had asked (FSH/LH/Testosterone) and they came out, according to my GP, to be in the ideal regions and ‘not even borderline’. Now I know that this means nothing, but he was not willing to take it much further (as you know) and proposed subscribing me Viagra, something which I refused.

To be honest, I am much better than the first time I posted on this forum which makes me think that I’m going back to normal but in the last couple of weeks I’ve noticed some difficulty again which makes me wonder whether it’s my head or my metabolism playing up, or both.

I know the tests I did are not enough to show a full picture but I have a backup plan: I am signed with PruHealth (private medical insurance) and I have a yearly health test coming up. I might be able to squeeze some more tests from them, but nothing’s sure.

Also, I’ve read a post in here about this guy who used to take vitamin A for cystic acne and thinks this has contributed to the problem. I used to take the same for more than a year when I was 17 and I believe it may have something to do with it (i.e. maybe the metabolism can take a hit once but not repeatedly)… Has anyone got any idea about this?

Thanks

#12

Ok it’s a year since my last update and here’s what I have to report.

My side effects seem to have gone away now. I think I can say I was completely free of side effects by November-December 2010 which is 4-5 months after I stopped taking the pill which is about 40% of the time I was taking the pill. During the time I have been active in sports (aerobic) and taking care of my diet.

But more importantly I have been taking care of my mental balance. Friends, hobbies, an understanding girlfriend and lots of personal development through reading (not literature related to this issue) and writing (even if it is just writing in this forum) was important to that. And discuss it! Definitely don’t keep it to yourselves. This is a time to realise who are the real friends you can talk to. Even if those friends are just someone in a forum or a chat.

I wish to everyone who is going through the same to get well and please do not revolve your life around it. I know it’s more easily said than done, because I’ve been there and it was very difficult for me to think of anything else at the time, but a human is more than just the addition of its parts. There are more than one way to contribute to yourself, your relationship, your friends and society and in times where we’re not 100% healthy, these are good times to explore other possibilities and experiences which we wouldn’t consider before.

In any way be hopeful because definitely in a very short time this issue has gained great publicity (and congratulations to the active members of this forum for that) and there are definitely forces working towards a solution.

I am not sure how else I can contribute, but just wanted to say that I am available to anyone for whatever way I can help, even if they just want to talk to someone.

Kostas

#13

Thanks for coming back to give us an update. It’s great that you are feeling better.

#14

Yes, even if I’m late I always had it in the back of my mind to come back and write an update. I don’t like people that are all active and enthusiastic when they need someone’s help and as soon as they’re over it they just disappear…

Anyway, you guys let me know if I can help in any way and all the best to you too.

#15

No5, how bad were your sexual side effects? Reduced size? Numbness? I know you said you had ED but how bad was it? Did you lose weight? Lose muscle mass/tone? Please let us know.

#16

Below is the list of side effects I’ve ticked when I first joined the forum. I’ve added a “before/after stopping the drug” indicator to make it more specific when the side effects appeared. Hope this helps.

Sexual
[X] Loss of Libido / Sex Drive (after)
[X] Erectile Dysfunction (after)
[X] Loss of Morning Erections (after)
[X] Loss of Spontaneous Erections (after)
[X] Loss of Nocturnal Erections (after)
[X] Watery Ejaculate (before)
[X] Reduced Ejaculate (before)

(I would add to the above the complete loss of erection which I think lasted for a couple of weeks after stopping the drug)

Mental
[X] Emotional Blunting / Emotionally Flat (before)
[X] Difficulty Focusing / Concentrating (before)
[X] Confusion (before)
[X] Memory Loss / Forgetfullness (before)
[X] Stumbling over Words / Losing Train of Thought (before)
[X] Slurring of Speech (before)
[X] Lack of Motivation / Feeling Passive / Complacency (before)
[X] Extreme Anxiety / Panic Attacks (for a short period when I stopped it)
[X] Depression / Melancholy (for a short period when I stopped it)

Physical
[X] Penile Tissue Changes (narrowing, shrinkage, wrinkled) (before)
[X] Testicular Pain (for a short period when I stopped it)
[X] Dry / Dark Circles under eyes (before)

Misc
[X] Prostate pain (for a short period when I stopped it)
[X] Persistent Fatigue / Exhaustion (before)

#17

Hi No5

I’m very glad to hear, that you have recovered!

It would be great if you could post a short resume of your story under “Recoveries”. I think that when most people visit this forum for the first time, they seek hope, and your story is very positive.

Kind regards
Morten

#18

Recovery section please.

Congrats No5

#19

He recovered in 4-5 months. Granted, that is a delayed recovery but i don’t think it should be in the recoveries section.

#20

Woods, thank you for your suggestion. I believe ‘Mens Rea’ has moved the whole thread to Recoveries so if someone wants they can follow it - it’s not that long anyway.

UK20 a ‘delayed recovery’ is a subset of ‘recovery’ so not really sure what you mean. If we accept the cause of my symptoms then we need to accept the recovery as well. Sure it didn’t take me 2 years of hormone therapy but it wasn’t seamless either. I was lucky enough to wane it myself (which is still a type of recovery even if it didn’t require drugs) within 5 months and I am very lucky about that, but it was not without the symptoms, anxiety and (even physical) pain that comes with it.