One year on, four months off

Member Stories
#1

Been lurking around these forums for a few months, but manning up to registering and writing this post took a while. English is only my fourth language, so I apologize in advance for any misunderstandings etc. I’ll do my best.

Started taking Propecia approx 16 months ago (April/May '09) for male pattern baldness. I saw a dermatologist about it, and he said there was nothing wrong, and that my hair was thick, but I felt pretty obsessive about it, so he gave me a prescription for Propecia. I was told there were no side effects worth mentioning.

I was alreay depressed at the time, but it got rapidly worse from that point. Things started improving somewhat when I stopped taking antidepressants in Feb 2010, which also lead me to start working out and losing weight, but I still felt something was a bit off. First noticed the sexual side effects in April 2010. (I had been isolated socially for almost a year, so I hadn’t really been in a sexual setting for a while, but thinking back, I realize that the problems started way sooner than that.) During foreplay, I was unable to get an erection. Blamed the alcohol (I hadn’t had anything), which the girl believed. I just figured that it might be nervousity.

Happened again in May with a new girl. Saw my MD about it, who said it could be me just being nervous, or possibly my recent change in weight. I found this site the same day (googled “Propecia sexual side effects”), and quit Propecia cold turkey. Got a prescription for Cialis. I actually noticed an immense improvement within days, but it soon got worse again. Tried to have sex again a week after quitting Propecia. Managed to gain at least an semi-erection during oral sex, but nothing more. Also tried Viagra and another another drug for treating ED during this summer, but it really seemed to have little or no effect at all. During at least 10-15 attempts to have sex, I managed to sort of perform once. Sort of. In a way. For a few minutes. Until I went flaccid again. Without climaxing.

Finally saw an urologist in late August. He has dealt with patients suffering from side effects after Propecia use before, so that’s good. I’m at least seeing someone who believes me and recognizes the problem. I’ve been taking 5mg Cialis a day since then (Aug '10), and scheduled for an appointment with an neurologist in a few weeks, but I really don’t think that’s enough.

My penis is smaller. To be fair, it has gotten a bit bigger again the last month, although still not what it used to be. I can’t remember the last time I had a full erection. I really don’t feel that much when I climax. I have more or less no sensitivity in my penis. It narrows an inch below the head. The testicles are wrinkly and look older. My interest in girls and sex is more or less gone. You’d think that the visual aspect of it would at least appeal to me… One of the most attractive girls I’ve ever seen gives me a blowjob, and I don’t even care enough to watch? It scares me.

There’s a few non-sexual side effects as well. Something has happened to my skin; before, I would get a tan after a few hours out in the sun. I’m white as chalk now. My areolas are bigger. I feel a sharp pain in the kidney area sometimes (my MD says it’s just a muscle, but I don’t know). Since quitting Propecia, my facial hair has hardened to the point where it’s actually painful to shave. My voice is deeper. Hairloss has accelerated again. I’m getting pimples. I feel like I’ve changed mentally too. I’m extremely cold and cynical, and there’s little left of my personality. I really am a different person.

Blood tests back in July showed that my estrogen levels were high. Still waiting for results from a more recent blood test.
Edit: Should probably include my age. I’m in my early twenties.

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
[ ] 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
[ ] Memory Loss / Forgetfullness
[ ] Stumbling over Words / Losing Train of Thought
[ ] Slurring of Speech
[X] Lack of Motivation / Feeling Passive / Complacency
[ ] Extreme Anxiety / Panic Attacks
[X] Depression / Melancholy

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

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

#2

Your side effects sound very similar to mine. Where are you in the the EU? and who is this urologist?

Finding a medical professional that believes propecia caused us problems is not easy, you are very lucky to have that at least.

#3

Welcome.

I also had some success with Cialis for a few weeks then nothing. I talked to Dr. Shippen about this and his opinion was to stay on it regardless just to help keep things moving down there and stave off the wastage.

Read a study the other day that people who have had clinical depression in the past (myself included) should NEVER be prescribed Finasteride under any circumstances. I just met with one of the post Fin Docs and he says to stay clear of the SSRI’s no matter what. Glad I decided to do that since Fin. Dr. Shippen gave me deplin. Too early to tell how its working.

Yea, very scary how many different aspects of your body/persona this medication can alter.

Well, at least trying to bring your estrogen down would be a starting point and see what happens to your symptoms.

#4

What study is this? Plese provide link to source, would be interested to see it.

#5

Hi hi. Your story and side effects are very similar to mine too.

I am very interested to hear what a neurologist thinks about the situation. It is my opinion that we are suffering the well-known side effects of androgen deprevation. See my theory thread; http://www.propeciahelp.com/forum/viewtopic.php?f=27&t=4327&start=0

Men that undergo androgen ablation for prostate cancer - including being administered finasteride - suffer permanent side effects in terms of their interest in sex, erections and mental functions. Unfortunatley it seems no studies or research has been conducted into how or why this can happen, prehaps because the men who undergo this treatment for prostate cancer are fairly elderly.

Prehaps the neurologist you will be seeing knows why being deprived of T/DHT can cause this brain damage? I also intend to see a neurologist but will have to wait many many months.

#6

I thought I saw the study on the twitter page. It also noted how many different hormones Fin can affect.

#7

Have an appointment with the urologist again this week. I still haven’t received the results from the last blood test, but I’m thinking I should bring him the list in the Blood Tests thread (viewtopic.php?f=4&t=92). Anything else I should mention?

Hi. I’m not from the UK or Ireland, and I’d prefer to stay as anonymous as possible, but if you send me an email (I haven’t been a member here long enough to send personal messages), I’ll be more than happy to give you the information.

He definitely believes that Propecia is the cause. I remember him saying something about being tired of dermatologists giving patients drugs they have little or no knowledge about. The almost complete loss of sensitivity down there puzzled him, though.

Hi. Thank you.

The first stint on Cialis (May '10) gave me nothing. The progress the days after I quit Prop happened without any medication. My MD gave me Cialis (20mg) for use when I tried to have sex, but it actually worked better without it. The 5 miligrams of Cialis I’m on daily now seems to have better effect.

Would be very interesting if you found a link to this. I was clinically depressed more or less throughout the whole year I used Propecia.

Hi, Oscar. Yeah, I’ll mention it. There’s a long wait here too, so I decided to pay my way in at a private practitioner. Have a feeling this whole thing is going to cost me.

#8

That’s because besides inhibiting DHT, Finasteride also inhibits the 5AR2 pathways of Progesterone --> Allopregnanolone (anti-depressant neurosteroid) and Deoxycorticosterone --> THDOC (anti-anxiety neurosteroid).

Depression: viewtopic.php?f=8&t=38
Graph: viewtopic.php?f=8&t=202

#9

Hi, Mew. Sorry about that - I should have been clearer. The depression was already there before taking Propecia (probably 2-3 months), but there’s no doubt that I got worse from taking it.

Just realized that I did some pretty extensive blood tests back in 2007, before any use of any medicine, be it Propecia or antidepressants. Think it actually included a few stool samples too. Comparing my current levels to the results from back then could be worth a go?

#10

Oscar: The neurologist had barely heard of it. Shot in the dark.

OK. So I’m still on Cialis (5 mg), and now also clomid (50 mg). Both daily. Not really that much of an improvement yet, but I’ll just have to wait and see.

Well. Problem is. I actually need Ritalin. Could that in any way affect me? Make recovery less likely? Have any effect at all?

#11

Who says you need it? You, or a doctor? For what reasons?

You should avoid taking anything unless absolutely necessary in my opinion. The more drugs you take, the easier it is for docs to blame these other medications for your condition, rather than Finasteride.

#12

I don’t need it as in a life necessity, but my grades improved by 50 % the one semester I used it on a regular basis. It’s for OCD and ADD. Agree with you, though, so I’m not using it. Thanks.

Quick question. I read this article. “Flaccid penis length is a poor estimate of erect length; a better estimate is stretched length, that is 12–13 cm, as shown in review by Wylie and Erdley.” To be honest, I don’t fully understand this sentence. Is the average length of a flaccid, stretched penis 12-13 cm?

My testosterone level has improved substantially. From early Nov to late Dec it went from 15 to 41, so I’m on 50 mg clomid every other day now, as opposed to seven times a week earlier. Still taking 5 mg cialis every day. I’m also getting spontaneous erections several times a day, and the penis sometimes does appear longer when erected. Takes some work, though. My penis points more upward. I ran out of cialis during the holidays, but I didn’t feel any negative difference the two days I went without it. Not that much of an improvement when it comes to sensitivity in the penis in general or the orgasms. My penis still narrows near the head, and the blood flow in the head itself is below par.

I try to exercise 90-120 minutes five or six times a week, and I’m avoiding alcohol. Staying healthy certainly won’t make it worse.

Oh, and I’ve shaved my hair. Learnt my lesson.

#13

You know, two weeks ago I started writing a positive update in this post, as I felt I had radically improved, but I decided to wait until after my next appointment with my urologist. That was one week ago, and I think I’ve crashed.

I’ve been off clomid altogether for more or less two and a half months, and it did show in my blood levels. My testosterone is down from 41 to 16.1 (the average is supposed to be 22-23). As mentioned in the above post, my testosterone level was 15 when I started taking clomid. I did, however, find a blood test from late 2007 (before any kind of medication), and my T level was 17 back then. I was severely out of shape, got little sleep, had a terrible diet and suffered from depression and anxiety back then, so I’m thinking that might have been too low too. I’ve started looking for even earlier blood tests.

Despite low testosterone, I still felt pretty good. My penis was bigger in general, both erect (I measured with my hands. Not really an exact science, but still) and flaccid. I know I’m pulling these numbers out of nowhere, but I would say I was about 75-80% recovered. Easier to get erections, easier to maintain the erections, penis pointing more upwards, everything felt better. My dosage of cialis was cut in half since the last post (about two and a half months), but I still didn’t really feel any decrease. So I was advised to stop cialis. Been off one week, and I think I’m actually worse now than a year ago. Penis is smaller (like I’ve been in really cold water) and I absolutely can not get erections. My urologist told me that I might expect to get a bit worse just after quitting (2-3 weeks), but I sure as fuck didn’t expect this. Fuck. This. Shit. I know some of you have experienced a lot less progress than me, and I apologize if you feel offended by me ranting over something that might just be a temporary setback, but this is way more than i expected. Is this normal? If I’m not getting better in two weeks I think I might get an appointment with one of the experts in the States.

#14

The more stories I hear of people using pharmacueticals to try to recover, the more I am glad I didn’t take that route. I think a pharmacuetical based PCT immediately post crash may be a good strategy. I missed that boat and then never tried a late pharma PCT. I’ve had a batch of clomid sitting on my desk for three months and haven’t bothered to use it. I’ve seen decent improvements via time, excercise, cleasing methodologies. I will continue with that path.

#15

Did your urologist do a trans-rectal ultra sound and test you for prostatitis? Where are you located in Europe? Perhaps you should talk to this guy…

viewtopic.php?f=27&t=5076

#16

hi, that is a whopping dose of clomiphene. If you look at the studies of Dr. Andre Guay (search his last name on this forum) the maximum dose he uses is 50 mg three times a week. He has studied this drug’s effects, prospectively following a group of over 100 secondary hypogonadism sufferers for over a year. Other doctors in the u.s. use less, 25 mg three times a week is common. I currently the later, lower dose.

By taking 50 mg daily you are risking things like eye floaters, overstimulating Ledyig cells etc.

give the clomiphene time to work (took me over two months to reach peak T levels), increase your 25 OH vitamin D3 to keep SHBG from climbing too high. Vit C (250 mg/day) is helpful for controlling the estradiol surge you can get from boosting your T up.

I am not a medical doctor, and you should not change your treatment without consulting with your doctor - all the same, hope this helps - kazman

#17

Hi. What kind of exercises have you done? Read your topic in this subforum, but saw little in-depth descriptions.

Hi. He has not done that test, but I will talk about him (or my GP) about it. Thank you, and thank you so much for that link. Definitely worth a look, and I will talk to him.

kazman: Hi. As mentioned, I am off clomiphene now, but I appreciate your input. Haven’t noticed any sides from being on such a high dosage, but I obviously have no idea if anything has happened to my Ledyig cells (not that I have any idea what those are). Is it possible to test this?

#18

I’m still a bit on the fence, to be honest. The crash back in May lasted for about 10-15 days, and I had a bad week in the middle of June too, but since then it’s been alright. I’ve obviously only tried this “route”, but there is absolutely no doubt that I’ve seen vast improvement during the 15 months I’ve been off; whereas in May/June '10 I would struggle to even get half-erect during oral sex, I am now able to get an erection within 15-25 seconds by myself. It’s not a full erection, but enough to have sex? I would say so. I’m not in a relationship at the moment, and I don’t exactly think one night stands would be a good idea with this physical and mental situation, but it’s definitely better than what I had to work with a year ago, when I did manage to have sex the times I actually got an erection. I went flaccid again pretty rapidly those times, and for all I know, that might happen again, but the penis is at least bigger and harder, the erection is fuller and it points more upwards. I would say that I’m maybe at 75-80 % when it comes to size and erection. As for sensibility and stamina (how long it takes me to ejaculate), I probably haven’t improved at all. Can still barely feel anything.

The mental sides are still pretty bad, and I’ve also started experiencing stumbling over words and slurring of speech, but some of these might be caused by the depression from suffering from ED instead of being actual Propecia side-effects.

Set for an appointment with an endo next week, and I’m also doing new bloodtests. My testosterone had hightened since May when I took my last bloodtest in June, so I’m curious to see how that has developed. I also planned to bring up solonjk’s theory in toadstool’s link posted above, but I see that his posts have been deleted. I’m reading the thread now, but what happened there?

#19

Get these tests done and post them here.

free testosterone
dht
dhea
3a-diol-g
shbg
e2 (sensitive)
prolactin
progesterone
pregnanelone
cortisol (24 hour urinary)
free T3
reverse T3

Th results of a study done on PFS patients will be out in mid-late September. This could possibly prove what is going on in us, and how we can move forward.

Did you have any of these sexual problems in 2007 when your testosterone was low prior to using finasteride??

#20

Hi, moonman.

No sexual problems in 2007. Those are the earliest testosterone levels I have, though, so it’s difficult to say if they were lower than usual at that point, or if my testosterone has always been below average. The problems started affecting me after ~6 months on Propecia, late in 2009. I also used an SSRI simultaneously, but I had been on antidepressants before (2008) without any sides.