16year olds story

Member Stories
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#1

  1. Where are you from (country)? United States

  2. 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?)
    I was on a site relating to accutane impotence. Someone posted a link to this site and said “accutane sufferers you are not alone” after reading some stuff on here i think i have a similar dilemma.

  3. What is your current age, height, weight?
    16 6,4 198 pounds. i used to be 6,5 actually i think i may have shrunk or started to hunch since this shitt

  4. Do you excercise regularly? If so, what type of excercise?
    ultimate frisbee for my highschool team. (great cardio) avid tennis player. lifting regularly for about 2 years. recently on a very consistent and normally effective plan but having bad results.

  5. What type of diet do you eat (vegetarian, meat eater, raw, fast-food/organic healthy)? i havnt had fast food since this happened to me. I have coffee and cereal and maybe an apple or banana for breakfast. lunch is school deli food normally like italian hoagies with milk and juice. dinner is always a meat and 2 veggies/grain at my house. mostly drink milk. used to snack constantly on things like cookies and muffins but ive gained a TON of weight in my abdomen recently so ive cut down big time

  6. Why did you take Finasteride (hair loss, BPH, other)?
    accutane generic amnesteem for acne

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

  8. How old were you, and WHEN (date) did you start Finasteride?
    16 late november 2010

  9. How old were you when you quit, and WHEN (date) did you quit?
    16 christmas eve 2010

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

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

  12. What dose did you take (eg. 1 mg/day, 1 mg every other day etc.)? 40mg daily

  13. How long into your use of Finasteride did you notice the onset of side effects? 15ish days

  14. What side effects did you experience while on the drug that have yet to resolve since discontinuation?
    impotence, no libido, cold penis and testicles, constant lack of energy and fatigue, weight gain only in abdomen, EXTREME muscle loss, went from maxing 200 on the bench to now having a hard time with 130. been working out but still getting weaker and weaker. running is harder and i get sore immediaetely. occasionally anxiety and depression maybe caused by accutane or caused by being upset about my condition. beard had become very full and now has stopped growing almost entirely. minor joint pain and clicking. concentration is largely impossible grades were at 3.6 probably by the end of this year around 2.5 because i just cant think right for some reason.
    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
[X] Inability to Ejaculate / Orgasm
[X] Reduced Sperm Count / Motility

Mental
[X] Emotional Blunting / Emotionally Flat
[X] Difficulty Focusing / Concentrating
[] 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
[ ] Testicular Pain
[ ] Testicular Shrinkage / Loss of Fullness
[X] Genital numbness / sensitivity decrease
[X] Weight Gain
[ ] Gynecomastia (male breasts)
[X] Muscle Wastage
[X] Muscle Weakness
[X] Joint Pain
[ ] Dry / Dark Circles under eyes

Misc
[ ] 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?
    Herbs including ginkgo biloba and st johns wort. vitamin b-12 zinc and a supplement called libido max containing maca ashwaganda dimethylglicine cdp choline Horny goat weed tribulus extract yohimbe extract l tyrosine larginine NADH and a “Bioperinbe complex” this allowed me to have sex with my girlfriend and a few times as well as masterbate a lot.

  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)? Endo is scheduled for 2 weeks from now. its hard to take care of this shit through my parents. they are very busy people.
    all hormonal details will be posted

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

  4. Tell us your story, in your own words, about your Finasteride usage and side effects experienced while on/off the drug.
    I took accutane for about 15 days when i was at my junior prom dancing with a girl who had a particularly nice booty. the weird thing was, while grinding on her i was hardly aroused at all. a little bit of activity but it just didnt feel right at all. i had had one shot of whiskey on the way there so i thought it was that. Afterwards i got annihilated and fucked a slammin chick. not my date cuz she told me when we got there that she had a boyfriend… bitches. anywho! my dick was barely hard and even tho i got through the act of sex, i hardly enjoyed it which sucked because she was totally beautiful and basically any guys dream bang. anyway i just thought the problem was the alcohol and didnt really worry about it. from then (december 17th i thiink prom was) until date. i have not had a drop of alcohol. a week later we got off school for break on the 23rd that night i went to a party and didnt get drunk or high like i normally would have but i did meet up with a girl who i had been talking to that week. long story short we were about to fuck and i thought that because i hadnt put anything in my body i was good. i wasnt. couldnt get it up at all. like nothing. embarrassing to say the least but she was drunk and i told her i was drunk and i found alternate means to satisfy her. that night i got home really depressed and worried that she was gonna tell the whole school. nice girl. weeks later and she didnt tell a soul. but that was the least of my worries because i googled to see if accutane can cause ed and i found that it can and PERMANENTLYY. I freaked like literally started bashing my head on the computer table and my mom came downstairs and started screaming because she thought i was on coke. no such luck. i was on accutane and had the first and worst panic attack of my life. i explained myself to her and was up all night in fear and agony. the night before that, was the last pill of isotretinoin(accutane) i ever took. After a sleepless and socially isolated christmas break i began to relax. a buddy of mine hit me up to party the last night of break and i thought what the hell might as well relax one last time before i have to go to school. I got high as fuck but didnt touch any alc. i hooked up with a girl who i didnt really know or (or like for that matter) and to my amazement my dick started getting hard! i was so relieved and felt amazing. when i got home my mom grounded me because i smelled of ganja so bad and i honestly couldnt care less. i was so thrilled to be back. I stayed home and spanked it with happy tears of joy for about two weeks. these two weeks of happiness were short lived. the day after i got off grounding. it came back like a lightswitch. everything shut off like before. i was devestated and i believe that it was my “crash” as many describe on here which is why i registered. i think i have essentially pfs. it is 3 very painful months later and my symptoms have only worsened. i startted daiting the girl that i had sex with after my prom in early feb and was able to do it a few more times using herbs but it was very diminished and i wasnt my usual self. i had dated a girl who i consistantly slept with for a year and had become pretty good as far as teenage guys go and even with the herbs my sexual ability was weak to say the least. very soft erections, im barely excited and i feel like i have to come like 2 minutes in. prior to that feeling it feels like nothingg at all. earlier today we were about to do it and i couldnt get hard enough to make penitration. to my surprise she was very supportive rather than the surprised wtf is wrong with you… that i was anticipating. she tried to get my revved up for a little while but nothing was working. i got so frustrated that i grabbed her off me and broke down and told her everything practically in tears. she was very supportive and assured me that she didnt care especially because she reminded me that i had given her one of her first orgasms while fingering her. that made my confidence go from 0/10 to 2/10 anyway it ended with a lot of mushy gushy cuddling and crying for both sides blah blah blah. but after browsing this forum more than any teen goes on facebook i decided i should share my story. what i am dealing with is most certainly the same as you poor guys whos stories ive read on here. im kinda bummed to become one of you no offense, but i feel like this is sort of like a brotherhood of men who have had there lives really messed up like mine is so even tho im only 16 and probably wont be taken too seriously on here because i didnt take propecia, i just wanted to tell my story (sorry so long and detailed) i just realized that! now but ill be posting hormones soon and am glad to be around people who are hurting the way i have been for what already seems like much too long. thanks!
    Billy.

#2

I feel so sad for you, atleast i got 27 normal years.

#3

You’re young mate, i reckon your body can mount a considerable recovery.

Get bloods from your GP/Endo. Get these:

Testosterone
Estrogen
FSH
LH
SHBG
Prolactin

Progesterone

Liver function test
Full thyroid profile
Cortisol

atleast…

As i said, chin up, you can make a recover. Do lots of exercise.

#4

yes tim, ive only had sex with a few different girls and i dont even care about college anymore because i know ill be too stressed to even apply myself and or have fun because theres really no point in partying. mens rea the positive feedback is much appreciated and i really hope your right. i will certainly get these things checked out and hopefully in the next few years we can all get off this board for good.

#5

An interesting side note about this story is that you weren’t even on a high enough dose to realistically put your acne into remission vis-a-vis the literature on isotretinoin. The consensus is that .5mg/kg/day is the minimum dosage considered effective; and given that you are 90kgs you were a little short. I guess it could be argued, that it was just off the mark, and so what; but, given that you are a big boy, it is a little suprising. Maybe, he/she was just scared of potential side effects. Some of the science argues 1-2mg/kg/day is the most effective. Perhaps your dermatologist was going for accumulative dose efficacy: in which case you would have had to remain on the poison for 6 months; but, even for that duration you would have fallen short of the ideal 120-150mg per kg, by quite a bit. At the 6 month mark you would have consumed 7200mg in total which would have equalled 80mg per kilogram, so significantly short of the 120-150mgs. So, the tragedy is that even though you were on a very conservative regimen which perhaps would not have even cleared you acne, and subsequently COULD have been pointless, the isotretinoin still did a number on you. I am also shocked to hear that you only got 15 days into the course, before it messed you up. I really feel bad for you Billy; but, given that you are so young I feel you can wriggle out of it. Never give up!

#6

The dose I was on was only going to be that low because it was the trial to see how it effected me. Not so great. I had to get blood work done twice and the people at the lab where I went never contacted me or anything but I will try to get a hold of the results of those tests as well as the one I’m taking very soon. My acne is close to gone but not for the right reason. I think something is wrong with how my body utilizes testosterone or something because I have almost no acne and I used to have it everywhere year round. I don’t care about acne at all. I can barely have sex, I’m getting weaker every day and have no motivation to even get out of bed. I just want to be me again and from what I’ve read on accutane there’s been no recoveries from this. I want to stay positive but when I talk to 35 year olds who have been like this since they were my age it’s hard. I refuse to live life this way and I will make any contribution no matter how small to help this. You guys are very brave me and I respect all the dtermination you guys have to fix this. I hope we all get together one day to celebrate a cure. Billy

#7

Hey, Billy: I was definitely not trying to knock you, and not even your dermatologist (well, maybe your dermatologist a little). Like I said in my original post: he was probably trying to minimize the potential for side effects, so I didn’t miss that point. The fact that he started out with a mild dose is proof that you had a conservative dermatologist who didn’t want to you use full throttle from the outset. Despite his care and intentions, the isotretinoin still proved to be poison. My prevailing point is that there really are no answers in life in general; and, all our cases here (yours and mine) are a testament to that.

I was also trying to lay bare that had things not turned nasty, and you continued with the regimen, even at the higher doses, but still conservative (i.e. 1mg/kg/day) we couldn’t have been certain that it would have cleared you long term. Maybe you would have required another course at a slightly higher dose; maybe on your second exposure things would have snapped. The crux of my point is no one knows what is more dangerous: is it high strength short exposure, or is it long exposure low dose. On this board, we have Spstriken, who got fucked up by a herb. It’s like no one really knows anything, and it is all a big game of Russian roulette.

There are countless people out there who have done 2,3 and even 4 courses with no remission. There are people who are on an indefinite low dose isotretinoin course, and Roche strongly condemns this. These people argue that there is less risk of side effects, and that they need something long term, because tane’s sebo-suppressive influences end when you stop the drug. There are people on acne boards considering Accutane for mild acne when it is meant for severe recalcitrant acne. The moderators on these boards actually condone this and don’t have a problem with it. It is all quite mad, and given all of this: it is quite easy to end up like us.

#8

yeah well i feel twice as shitty because even tho he recommended it to me after antibiotics didnt work, i wasnt even skeptical because i saw how well it worked for my friend. i cant believe after less than a month this happened to me. my girlfriend is probably one of the most beautiful girls ive ever met. prior to this, she would have been the type of girl who id day dream about making love to all day. I just got home from work and she is down the street from me at my friends party. she told me to come but im scared that she will want to have sex with me or even just get intimate which for me now isnt fun but scary and awkward. my girl is a sweetheart and would never hurt me. i told her my problems and she was as caring and sweet as i could imagine, but if i was in her shoes, i would feel like i was only in the relationship because i felt bad. with my prior sex drive and a girl who wasnt able to fuck id be likee seeeyaaaa so i guess its karma… im really having a hard time enjoying my life and honestly cant see it going on this way. i wont end it because id rather have a miserable life than none at all. i think i might drop out of highschool because i cant keep up with my work anymore. its like the shit doesnt matter because i dont care about college. i couldnt go to college like this. i used to fill out dozens of forms and shit like that for schools and things like community service. now when i get them in the mail i just throw them out. i might just break open my savings and try to enjoy life in some way because right now im at an all time low and everything is impossible. in school i feel like my brains not working right and i cant do well no matter how hard i try. so ive stopped trying. im sorry for anyone having to read my rediculous rant but i just dont know what to do

#9

You at least had the sense to get off it as quickly as you did; you’d be amazed at how many people would have ignored some of those signs, because clear skin is their number one priority. You showed maturity by acting the way you did. I feel for you, because you are so young - well compared to the guys on this board, and you have to contend with way too much shit.

I don’t think its karma: pretty much every guy acts like you mentioned, so I don’t think your getting payback. I just don’t believe God intervenes in stuff, in general. Things play out the way they way they play out and that is all there is to it. I believe in God, but I don’t believe in an interventionist God: I mean how can we come to terms with the people at Roche and Merck being allowed to walk the earth, given what they do? Accutane, in particular, is a crude, under-engineered misappropriation of nature; and battling acne or even hair loss is a battle fraught with too many potential pitfalls.

I hear you on the school and college matters: it will be very hard. I wouldn’t give up on the girl just yet, however. There is one sex act the girls like more than all the others, and you can still perform that, I imagine. Hey, also it has only been 3 months and as everyone here will attest things do get better with time. I know things are unbearable now, but with time things will become better. Never concede defeat to some little pill!!

#10

Take notworthit’s advice, give it time. I went from being almost completely impotent after my accutane crash to at least being able to get it up enough to have sex about 6 months later. Stick with eating healthy, and stay away from alcohol. I don’t know how much difference it would have made, but I believe I could have made more of a recovery if I wasn’t drinking and eating like shit before my crash and for the few months after.

#11

Thanks for responding to my post. Believe me when I say that at one time I was in as bad of a position as you. If your future ends up being like mine don’t feel too bad. Although my problems have pretty much negated me having the great sex life I should have had, I have managed to have an OK sex life by taking advantage of every “bout” of feeling even slightly horny that I have. Even managed to find a nice (and attractive) girl who loves me even though she knows i’m fkd up and who is still willing to marry me, made it through two years of college with a 3.75 gpa while working full time (regretfully quit because the job and girl were too much to handle along with school), and was able to build a few good friendships despite not being able to feel happy for more than half an hour at a time or smiling often. I won’t lie, it still feels like hell when you’re stuck in a body and mind that don’t work the way they used to, but hopefully you’ll feel much better given some time and can learn to cope with what has happened until this disease is figured out. Everything will probably be more of a battle than it would be for most people, but you’ll still be able to find some good things in your life

I also see you live in Philli, might be worth avoiding the hassle of going to too many regular endos or urologists and instead see Dr. Shippen for your blood work, I think his office is only a couple hours away from you. He told me that my symptoms sounded like side effects of drugs for prostate cancer before I even knew about post finasteride, accutane, SSRI, related problems. If you haven’t already, tell your parents and the doctor who prescribed you this shit about what happened to you.

You also asked if this would have an effect on our kids, Hopefully there is enough error control in sperm production to filter out any negative effects that may have been caused by the drugs since I’ll probably be trying to have a kid in the next few years. It might not be so easy to have a kid though, my semen analysis came back pretty lousy but it wasn’t to the point of being under-fertile. I’m pretty sure there is a post on this site where a few guys mentioned having perfectly healthy kids despite their side effects. Tretinoin may be a little bit of a different story than finasteride, but i seriously doubt your low dose would cause the dna damage linked with its use in cancer therapy.

Maybe you can consider yourself lucky in the respect that medical science has come a long way since my day and you may only have to go through this for a few years or less. Your also lucky to have found a girl right now who is ok with everything. Take this to heart when I say to never let a woman give you grief over your problems, if so get rid of her and find a better one.

Don’t let your future get fkd up by this in any case.

#12

sorry for the negativity on that last post guys. the positivity is much appreciated! dubya it makes me feel great to come into contact with someone like yourself with some positive talk about continuing life because everyone else i talked to who got this from accutane just made me wanna kill myself. those thoughts are gone and ive been very active, hitting the gym a ton and eating right. its still annoying tho because im continuing to lose strength. i havnt done creatine in a while but i used to do that shit mad way before my accutane experience. (i stopped when i started tane cuz i didnt wanna mix the two) i was wondering if you thought i should do some creatine to help cuz i saw that you had been on it. also you said you didnt like the adderall but took it from 8th grade to mid sophomore year and stopped because i thought i didnt need it but now my attention span is like non existant so id like to go back on it. just curious on your thoughts and really appreciate your time my friend! cheers!

#13

Just think about this, something is found in five years that will enable everyone on this message board to live a normal life, and I fkn killed myself so there’s absolutely no chance of me getting better. I’ve been through periods of suicidal thoughts too, but they always pass. Sorry to hear about your muscle loss brother, it’s one of the side effects that I was lucky not to have. Actually, we should both consider ourselve’s lucky to have been spared some of the more horrific accutane side effects that i have heard of. Please get blood work done if you haven’t already. The muscle loss might just be caused by low T and I doubt creatine will help much if that is the case. I only took creatine because I read posts on bodybuilding forums about it making some guys super horny, and raising DHT. It didn’t do shit for my dick.

I suppose Adderall wouldn’t be that bad, you have weigh it’s benefits against how it would effect any recovery you might have, but who knows?

Its strange that you mentioned being on adderall, I was put on wellbutrin for a bullshit adhd diagnosis around the same time i was prescribed tretinoin. I totally forgot about being on tretinoin, and often blamed drinking while taking wellbutrin as the cause of my sickness since I wasn’t even taking the tretinoin or accutane when i crashed.

What a fkn miracle, my acne would be permanently cured and according to my psychiatrist, my brain would be permanetly re-wired to work better, both before I started college. HA-HA-HA!

Anyways, we need to figure out some way to get involved in finding the cure, rather than just posting defeatist messages on the internet the way it seems like most accutane sufferers have done before us. seriously.

keep fighting man.

#14

i agree that we should do whatever we can to help. i just dont know what i can do as an individual. im getting extensive tests on the 18th which seems so far away. i recently started taking strattera to help my add and it seems to have helped my ed very slightly because i can focus all of my energy on sexual thoughts and getting hard. i think i would like to schedule an appointment with dr shippen because you said hes not too far from where we live. as far as the muscle loss im just getting worse. ive managed to stay skinny but im just kinda flabby. hopefully the tests will give me some clues. id like to get in touch with more of us. i dont think class action law suit is possible honestly unless we get huge numbers to come forward, even still we all probably took different version of the drug. im willing to test any sort of therapy or treatment that is reasonable so maybe well just have to keep trying til we find what works

#15

I were you , and if your parents can get you there, you should see Dr. Jacobs in NY before you see Shippen. I’m a patient of both of them. Jacobs definately will be more help to you. Jacobs is way more qualified than Shippen and Jacobs is getting involved in alot of stuff that isnt discussed on the forum. Just trust me on this.

#16

Actually many, many millions of US$ have already paid out by Roche to people suffering accutane side effects. If you had your own forum and some organisation you would probably have already found out what was the cause of your side effects by now and be well on the way to some sort of cure.

#17

Has Jacobs or Shippen actually cured anyone? Meaning, have they relieved anyone from their side effects…

PS: did not mean that to be a smart ass remark… Just a question…

#18

Yeah right, Oscar: there are people out there who have been suffering since the 80’s, with isotretinoin, and, the slightest inroad has yet to occur. He will get nothing for the side effects he is reporting. There are payouts for very severe cases of IBS, but that is for cases that occurred before the updated literature; hence, all the ads on T.V. There are no payouts for depression, fatigue, loss of muscle mass, etc.

#19

boston thankyou very much for your recommendation! will do! can insurance cover? i have the best caliber insurance but im not very wealthy ($500 appointments arent happening for a long time unless im throwing down 300 or not going to college anymore) just curious. pm me please. as much as i hate to oscar, i have to agree with notworthit. if you guys, arent all driving porsches right now, than im not gonna be any time soon. id have to sue the company that makes amnesteem, a generic isotretinoin. roche doesnt even make accutane any more so as far as im concerned its a lost cause. i could spend the rest of my life trying to gather the damaged souls who this happened to and 90% would have taken a different version of iso because amnesteem is very very new. of the few i could find i doubt theyd be as willing as myself to shout MA DICK DONT WORK! in front of a courtroom. after endless searching id be left with roughly 10 guys scattered throughout the us lol. dont mean this in a negative way whatsoever, just being realistic. im not wasting the energy at this point. I will certainly try to contact these people as much as possible as time goes but i dont think theres gonna be any isotretinoin ED commercials on tv any time soon.

#20

Good news, even if your parents can’t get you to NYC, I,m pretty sure your initial appointment with Jacobs can be a phone consultation. Nothing would beat being there in person though. Have you discussed in detail with your parents what has happened to you, and how serious it is to you? When I finally got the courage to tell my father he fed me a line of “your body is constantly going through changes when you’re young” bullshit. May your family be more wise and caring. Don’t let it hurt your pride asking your parents for money to get the help you need either.

As for litigation; don’t sweat over it too much at the moment. If we won every penny in the pockets of these pharma companies, what difference would it make if we were stuck like this and driving porsches…

Oscar had a good point. It still boggles my mind that millions have been awarded to accutane plaintiffs without the slightest serious effort being put into finding a cure, even if it was only for digestive tract related side effects. Hell, the research may have eventually lead to a cure for our side effects as well as finasteride’s side effects, if ours is indeed the same core problem.
The idea that so many of us who have taken isotretinoin are suffering from the same fundamental disease as those who have taken other 5-ar inhibitors has been discussed quite a few times on this site before.
I think you are doing your part in getting labwork done and seeing the right doctors.

Glad to hear you are doing well with the Strattera, but it is known to cause sexual sides so be careful with it. I took it for 2 months without noticing any change in libido for better or worse though. Hopefully it will help you get through this slump and you can get off of it in a few months.
Also good to hear your junk is functioning better. I know that means a lot.

peace.