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Where are you from (country)? Ireland
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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?) Honestly can’t remember, I’ve been lurking here for well over a year now.
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What is your current age, height, weight? 20, 6’ 2, 80 kg
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Do you excercise regularly? If so, what type of excercise? No
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What type of diet do you eat (vegetarian, meat eater, raw, fast-food/organic healthy)? Meat eater
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Why did you take Finasteride (hair loss, BPH, other)? I took Accutane for acne
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For how long did you take Finasteride (weeks/months/years)? Accutane 5 months first course, then again for 6 weeks
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How old were you, and WHEN (date) did you start Finasteride? 15, March 2007
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How old were you when you quit, and WHEN (date) did you quit? first course, 16, august 2007. second course Feb 2008
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How did you quit (cold turkey or taper off)? Cold turker
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What type of Finasteride did you use – Propecia, Proscar, Fincar or other generic? roaccutane by Roche
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What dose did you take (eg. 1 mg/day, 1 mg every other day etc.)? 75 mg/day
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How long into your use of Finasteride did you notice the onset of side effects?
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What side effects did you experience while on the drug that have yet to resolve since discontinuation? erectile dysfunction, low/no libido, erythema, dry lips, geographical tongue
Put an X beside all that apply:
Sexual
[ x] Loss of Libido / Sex Drive
[ x] Erectile Dysfunction
[ x] Complete Impotence
[ x] Loss of Morning Erections
[ x] Loss of Spontaneous Erections
[ x] Loss of Nocturnal Erections
[ ] Watery Ejaculate
[ ] Reduced Ejaculate
[ ] Inability to Ejaculate / Orgasm
[ ] Reduced Sperm Count / Motility
Mental
[ x] Emotional Blunting / Emotionally Flat
[ ] Difficulty Focusing / Concentrating
[ ] Confusion
[ ] Memory Loss / Forgetfullness
[ ] Stumbling over Words / Losing Train of Thought
[ ] Slurring of Speech
[ x] Lack of Motivation / Feeling Passive / Complacency
[ x] Extreme Anxiety / Panic Attacks
[ x] Depression / Melancholy
Physical
[ ] Penile Tissue Changes (narrowing, shrinkage, wrinkled)
[ ] Penis curvature / rotation on axis
[ ] Testicular Pain
[ ] 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
[ ] Prostate pain
[ ] Persistent Fatigue / Exhaustion
[ ] Stomach Pains / Digestion Problems
[ ] Constipation / “Poo Pellets”
[ x] Vision - Acuity Decrease / Blurriness
[ ] Increased hair loss
[ ] Frequent urination
[ ] Lowered body temperature
[ ] Other (please explain)
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What (if any) treatments have you undertaken to recover from your side effects since discontinuation of the drug?
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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)?
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Anything not listed in the above questions you’d like to share about your experience with Finasteride?
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Tell us your story, in your own words, about your Finasteride usage and side effects experienced while on/off the drug.
Long time lurker, first time poster. My story echoes the many of yours, just substitute Isotretinoin for Finasteride… I first took Accutane in early 2007 when I was 15… didn’t notice any real changes until about month 2, when the consistency of my semen became very lumpy, thick and yellow. This subsided upon discontinuation. However, I’ve seen here that chronic prostatitis/prostate issues is one theory of how we’ve come to have these sexual side effects. As the prostate contributes ~60% of total volume of seminal fluid, could this change in semen consistency be indicative of prostate changes during treatment? My libido and potency also decreased during treatment but I didn’t make the connection with Accutane as no sexual side effects were listed in the literature accompanying the “medicine”. Finished the course in late august, results on clearing acne were good so I was happy with that. My troubles maintaining erection and with libido didn’t subside but I still wasn’t aware that Accutane had been the source of these. A few months later I had a relapse of acne, and I was prescribed Accutane again in late January 2008. I was shocked when I noticed all my sexual side effects were suddenly severely exacerbated when I started taking the drug again. Erections were difficult to obtain and nearly impossible to maintain without constant physical stimulation. My libido was literally 5-10% of what it had been before. At this point I became suspicious that accutane might be causing these problems, so I took it upon myself to research it online. First page I went to was wikipedia and I was absolutely horrified when I saw ‘erectile dysfunction’ listed as a rare side effect. Further searching unearthed dozens of testimonies from patients who had suffered in a similar manner. At this point I realised I had to stop taking accutane. Telling my parents what was going on was incredibly difficult, I don’t think they believed me at first to be quite honest. Neither did most of the doctors & psychologists I would see over the subsequent months and years, who would forcefully try to convince me it was all psychological… at one point I actually believed it was psychological, yet nothing ever improved… In fact, the situation has actually got worse as time has progressed. I’ve seen all sorts of doctors over the past few years, psychiatrists, endocrinologists, several urologists, and none have been able to offer much if anything in the form of treatment. I travelled to England to see an apparently world-renowned andrologist who was aware of propecia’s propensity to cause sexual side-effects but was not aware that Accutane could cause the same. Although he wasn’t 100% convinced I do think he believed me for the most part. Still, he couldn’t offer much help in terms of treating this. He prescribed Dostinex, but this didn’t help much.
I think it’s interesting that the second course, although brief (5 weeks or so), seemed to cause an awful lot more damage than the first, longer course (5 months or so) did. This suggests to me that there is a certain amount of the drug that can be taken before these detrimental effects manifest in devastating proportions. Once this threshold is surpassed it seems there is no going back and it is a fairly rapid decline…I’m not sure if this is also the case for finasteride or not. Also, I think the chances of developing these side-effects increases rapidly with escalating dose. I was on a very high dose, which I only realised/learnt much later.
Also, I believe that this side effect is probably a lot more common in Accutane users than it would appear. Firstly, due to the sensitive nature of this issue I don’t think young boys would be very inclined to discuss these issues with their doctor unless it progressed to a disastrous state. As most people only take one course of Accutane, there is also the high probability that if someone suffers these side-effects, they don’t make the association with the drug (as it’s not listed as an official side-effect). Had I not taken it a second time I myself would probably never attributed my problems to taking Accutane. I believe with most people this side-effect goes away upon cessation of the drug, for those that continue to suffer, they are likely relentlessly told the problem is psychological by doctors. After suffering for months/years, if the doctors finally accept that the problems are not psychological, they are likely misdiagnosed as having idiopathic venous leak or something along those lines…
My derm reported this side effect to Roche who claimed that they had heard of just two such cases of ED with accutane, both of which resolved upon discontinuation. I later learnt that this was not true; I found an official document detailing some adverse reports of accutane reported to roche in the early 1980s, ‘impotence’ and ‘libido decreased’ were commonplace. house.gov/stupak/accutane/p1_46.pdf
I have tried all sorts of medications, supplements & herbs that purportedly have aphrodisiac effects - Dostinex, l-tyrosine, Catuaba, Muira Puama, Trazodone, Bupropion, Buspirone, Ginseng, l-arginine, Damiana, Tongkat Ali and loads more bullshit that I knew deep down wouldn’t work but I just took in order to retain some degree of hope through all this… nothing has helped really. Tongkat Ali helped slightly, I felt a slight increase in sex drive, probably to around 10% of before, and I was actually able to maintain an erection on standing, something which has been pretty much impossible for the past 4/5 years. However, the libido boost wasn’t steady while I was taking it and despite my best efforts to cycle Tongkat Ali (I did 3 days on, 4 off), it loses effectiveness very quickly.
Other long-term side-effects I have suffered as a result of this include very dry skin (can only shower/wet my skin about twice/3 times max a week, despite moisturising constantly), erythema, extremely dry lips, deteriorating eye-sight (I feel this is related to Accutane but it may be a coincidence as well). Depression & anxiety also but I think these are more a result of sexual problems rather than Accutane itself. Lethargy as well, not sure if accutane contributed to this. Don’t seem to have the brain fog that’s common among you guys, or the joint problems/bowel problems that affect other accutane sufferers. I do fear these might come in the future. Another side effect I developed during Accutane treatment that never went away is geographical tongue – this can be quite painful at times. This makes me think there might be some immune deficiency coming into play.
I’m 20 now and to say that the last 4/5 years have been a nightmare would be a gross understatement. Over the years, my predicament has just gotten worse. Cialis and other pde5 inhibitors have lost efficacy over time, and a penile constriction ring doesn’t work. Not only that, but I developed really bad social anxiety due to having such low self-esteem and self-confidence, so I find it difficult to make new friends. I can’t talk to people about this, which is so frustrating. I’ve perfected the art of pretending everything is great, at this stage I’m so good at putting up a facade that even my parents can’t tell when I’m particularly upset.
Some important hormone assays:
7/3/11
Estradiol: 152 pmol/L (28-156)
Prolactin: 311 mU/L (86-324)
Testosterone: 27.5 nmol/L (10-28)
DHT: 0.634 nmol/L (0.323-1.637)
18/11/09
Free-T4: 17.5 pmol/L (12-22)
TSH: 3.07 mIU/L (0.4-3.8)
LH: 6.1 IU/L (1.7-8.6)
FSH: 5.4 IU/L (1.5-12.4)
Testosterone: 22.1 nmol/L (9.9-27.8)
I’ve had other blood panels done, and everything always looks really good. A few things I haven’t had tested include free T and SHBG – despite them being requested by the doctors, twice. The lab doesn’t test them, for some reason.
My cousin also developed these sides as well a few years after while taking accutane. (luckily for him, his sides went away after) It’s important to note that he DIDN’T know that I had suffered those sides as well, so his case was legit. This suggests that there is indeed a genetic predisposition to developing these effects. Another point of interest is that he is my cousin on my father’s side. If there is a common genetic weakness that makes us vulnerable to these sexual side-effects, this suggest it’s not in the gene encoding the androgen receptor, as this lies on the X chromosome and thus comes from the mother.
I’m interested in TRT and trying to attain supraphysiogical levels - has anyone attempted this with success? It seems all the people who try TRT here have relatively low levels to begin with, whereas mine are already quite high. If I were to take exogenous testosterone, would my HPTA eventually shut down completely and would I drop back to the levels I’m at now?
