Editorial: Bill G.
Sex and skin
There are an ever-increasing and disturbing number of young people claiming their sex lives have been permanently ruined from taking the acne drug, isotretinoin, commonly referred to by its former brand-name, Accutane.
Often these affected young men and women, many in their teens and early 20s, cannot overcome their embarrassment to report sexual side effects while taking the drug. Or they continue to expect those side effects to abate after cessation of the drug. Sometimes, they discontinue isotretinoin early because of sexual problems only to find that the problems get worse and persist indefinitely after taking the last pill.
When people finally decide to seek medical intervention for these symptoms, many encounter fierce resistance from dermatologists and general practitioners when they explain that isotretinoin played a role in their life-altering condition, who can point to the fact that sexual complications are not listed on isotretinoin’s laundry list of side effects.
Stories of sexual side effects have played out in doctor’s offices and online forums past and present, including the once active ragforum.com website and the now popular acne.org website. Sexual dysfunction has been my lot in life since taking Accutane over 14 years ago, and as noted, I am far from alone.
The problem
Our problems closely resemble PFS (Post-Finasteride Syndrome) and PSSD (Post-SSRI Sexual Dysfunction).
After going on treatment many people get mild-to-debilitating anhedonia, anxiety and fatigue. The sexual symptoms may initially be relatively mild. The problem can then significantly and rapidly worsen when isotretinoin is stopped. Others have noted that it gets gradually worse on treatment and then continues to worsen when treatment is stopped.
Just as isotretinoin’s renowned anti-acneic effects are known to last for life for some people, its potential sexual side effects sometimes do also. Our symptoms are typically treatment resistant. While some have noted a remission of symptoms over time, most have been left fruitlessly attempting symptom management for years.
The sexual symptoms which occur as a result of isotretinoin in men include erectile dysfunction, impotence, partial or complete loss of libido, genital anesthesia, anorgasmia, decreased and watery ejaculate, shrinkage in the flaccid state and lack of blood flow to the glans when erect.
Women have reported vaginal dryness, painful intercourse, loss of libido, genital anesthesia, and anorgasmia as a result of isotretinoin treatment, any of which may accompany altered menses, loss of menstruation and infertility.
A battle of wills
Visits to the doctor can become a battle of wills when a generally healthy looking young person walks through the door complaining of erectile dysfunction or other sexual symptoms. Many of us face difficulty when we try to implicate a drug we are no longer taking as the cause of our continued sexual dysfunction.
In the event that a conventional test for hypogonadism is conducted, results typically fall within the normal reference range. Male sufferers of our condition will often be told by endocrinologists that their testosterone is a little low for their age but is not low enough to warrant treatment.
Even for those who have discovered hormonal imbalances after seeking medical attention, hormone replacement therapy (HRT) has done little to provide adequate symptom relief, even under the care of doctors whose specialty is HRT.
Would you accept this for clear skin?
The following quotes describe in the sufferer’s own words how isotretinoin has damaged their sex lives:
- “It’s been a year since I stopped taking Accutane and nothing has changed. Erections are almost impossible for me to get and orgasms feel very bland. I have stopped dating girls for the fear of them wanting to have sex and me not even being able to. I have never had sex and now I will never get to experience how great it is and the wonderful orgasms I used to have. Drugs like Viagra do not help me at all. Please for the love of God do not take this drug. I don’t even feel human anymore.”
- “I have had severe lasting effects that could be from nowhere else besides Accutane. I’m glad to know I’m not just a complete anomaly and other people have had the same problems too. I started to have “down there” dryness that gradually got worse as I was on Accutane and since I have been off of it, my problem has gotten progressively worse and now it is very difficult to have any wetness at all. I have used lube since I was on Accutane and now can’t have sex without it”.
- “A year after my brother was on Accutane he confided in me that he couldn’t keep erections well and said he really had no feeling in the head of his penis. I was utterly shocked because I was going through the same issue. I thought it was genetic because I was so sold on Accutane being safe I never correlated the two. His friend also experienced the exact same side effects. Think about it? The only 3 males I have known to take Accutane, myself, my brother and his friend all started to become impotent weeks into their course and have been that way 15 years later.”
- “Since Accutane my sex drive feels totally wiped out. I had been seeing this wonderful guy, and I had to tell him that I need to put everything on pause. I could not imagine being in a romantic relationship with anyone while in this state. Based on what happened to me and others and what I have read in the literature, I absolutely believe that 5-alpha reductase inhibitors like Accutane spell disaster for some folks’ sex lives. This has to be one of the least curable and most devastating of Accutane’s side effects. Not only do dermatologists seem wholly unaware of and/or ignorant of this problem, there is also no way to screen for one’s risk for this.”
- “I know for a fact that Accutane has caused my impotence, complete loss of libido and sexual pain/no pleasure. It started during my 1 month trial dose so I got off but 4 weeks later the same exact symptoms kicked in and have been present to date. I’m 16 years old, how can this happen to me?”
- “I’m writing on behalf of my 19 year old son. He started taking Isotretinoin (Accutane) in April of 2007. He was on it for at least 2 years. A year ago he confided in me that he was impotent. (How difficult that must have been for him to tell me…) He had a normal healthy sex life before this medication. We are in the process of having things checked out.”
- “A few weeks into my course my penis went numb and I started having trouble “getting it up”. I realized I couldn’t feel happy or cry about anything either. I’ve been stuck like this for over ten years. This is a living Hell! I never had anything like that happen to me before Accutane. The ironic part is that my acne wasn’t even that bad.”
What’s going on?
So, is this simply hearsay that isotretinoin can cause sexual dysfunction?
A study published in the November-December 2005 Spanish Urological Journal suggests that sexual adverse reactions are far more prevalent than what one would assume by viewing FDA statistics or browsing anecdotal reports on internet forums (1).
- Six out of 20 (thirty percent) of patients receiving isotretinoin developed erectile dysfunction during the study, according to the IIEF-5 scale.
- Only two out of 35 (five percent) of the patients receiving an antibiotic (minocycline) developed ED during the same study.
- 12 out of 20 (sixty percent) of the group given isotretinoin were found to have developed depression during the treatment as measured by the Hamilton Rating Scale for Depression.
- Only three out of 35 (eight percent) of the control group were found to have developed depression.
Unless the methodology in the study was extremely flawed, this is clear evidence of a correlation between isotretinoin and both erectile dysfunction and depression. Has this study been ignored by those whose job it is to protect or at least inform the public of such a deleterious effect of this prescription drug?
Is the erectile dysfunction dependent on depression?
The majority of affected men state a complete loss or significant decrease in morning and nocturnal erections. Roughly half of all members of the Accutane Sufferer’s Forum, a popular internet forum dedicated to overcoming isotretinoin-induced sexual dysfunction, deny that continuing psychiatric symptoms occur alongside their erectile dysfunction, although all members of the forum are more than willing to admit to the sexual side effects that plague them.
In a 2009 case report concerning a similar drug, acitretin, a 39 year old patient with no depressive symptoms reported experiencing erectile dysfunction while undergoing treatment. The patient recovered after stopping treatment and refused a rechallenge (2).
The authors cited several cases where erectile dysfunction occurred independently of depression during retinoid therapy and suggested that erectile dysfunction may be a side effect of the entire retinoid class of drugs, to which isotretinoin belongs. Importantly, the authors also commented on the general unwillingness of patients to report erectile dysfunction.
This year, a case of a 20 year old developing gynecomastia related to isotretinoin treatment was reported (3). The authors noted three similar case reports and suggested this could be due to a decrease in the effects of testosterone caused by the drug.
Studies demonstrate that isotretinoin significantly disrupts normal endocrine function. IGF-1, pituitary hormones, 5-alpha and 3-alpha reduced steroids, and androgen receptor levels have been observed to be significantly decreased in patients as a result of isotretinoin treatment. Hormonal antagonism elicited by isotretinoin is considered to be one of the ways it helps in acne. Hormonal antagonism is also believed by many in our patient group to be a likely explanation of the sexual side effects they experienced as a result of taking this drug. But it’s difficult for anyone to help given the current limited understanding of isotretinoin’s full range of biological effects.
A medical hypothesis published in 2009 proposed that long-term side effects associated with isotretinoin, including erectile dysfunction, may be the end result of persistent modifications to mechanisms which control gene expression (4). If true, this would indeed explain the enduring nature of sexual symptoms which emerged during isotretinoin treatment.
Accutane and suicide
History shows that in many instances, isotretinoin has been implicated by the victim or victim’s family as the cause of self-inflicted death. Could the perceived shame and dread about future prospects for relationships and families brought about by sexual side effects be one of the determining factors in the reported cases of Accutane suicides?
Jesse Jones, 24, of Dorset, England, said in a final e-mail to his parents: “Anything to do with the opposite sex isn’t psychologically appealing. I used to have to try and stop myself from thinking about girls all of the time; now, I could hardly care less.” Loss of libido was one of the many symptoms Jesse and his parents blamed directly on Roaccutane.
It is common knowledge that isotretinoin is prescribed for off-label use by dermatologists to treat mild to moderate acne, a use for which it is explicitly not intended for. Isotretinoin is a curse disguised as a blessing to the minority of us who suffer severely after ingesting the drug. For those of us with sexual dysfunction, our scars are much deeper than our acne would have ever caused. To date, no direct link between isotretinoin and these side effects has been proven, but anecdotal evidence and existing studies point to a need for confirmation of what too many of us have experienced. It is our great hope that “persistent sexual dysfunction” is added to this drug’s list of adverse reactions in the near future so that patients get this warning that they so deserve.
References
- Tirado Sánchez A, León Dorantes G. [Erectile dysfunction during isotretinoin therapy].
- Marco Rossi and Michele Pellegrino. Acitretin-associated erectile dysfunction: a case report
- Ustun I, Rifaioglu EN, Sen BB, Inam MU, Gokce C. Gynecomastia: a rare complication of isoretinoin?
- Csoka AB, Szyf M. Epigenetic side-effects of common pharmaceuticals: a potential new field in medicine and pharmacology.
Related content
Peer-reviewed published papers:
- Diagnostic criteria for enduring sexual dysfunction after treatment with antidepressants, finasteride and isotretinoin
- Enduring sexual dysfunction after treatment with antidepressants, 5α-reductase inhibitors and isotretinoin: 300 cases
- 120 cases of enduring sexual dysfunction following treatment
Blog posts:
Other:
Margaret says
Very appropriate article. If you like sex even a little bit, know that that enjoyment could all be taken from you if you take Accutane. Sexual dysfunction is pure hell. This warning absolutely needs to be added to the paragraph of side effects on the label. People need to know that this is a possibility. If you’ve experienced this side effect, please report it through the FDA MedWatch program and on this website.
Kilion Thorn says
yes, I am experiencing it, ive been using Acnetrex since Nov.2013. Beforehand, I can say that I have that extreme libido, I am thinking of myself as a maniac but recently I am noticing myself as a blunt person. I am experiencing erection but its not lasting. I have the desire but my body is not responding. I wanna masturbate but my thing is just that flaccid.
salim says
I have the same problem as you
I’m 22 year old !!!!!
what should i do? what did you do? Is the problem gone after a while?
Perene says
Had loss of libido as well. Please read my full story here:
https://www.acne.org/messageboard/topic/295030-repairing-the-long-term-damage-from-accutane/?page=579#comment-3582096
Please note that I also posted blood test results, and I will do a spermogram to evaluate my condition. I don’t think anything will appear in the results, but you never know.
Like I said there I’ll also try to increase my testosterone naturally, visiting a nutritionist and perhaps a personal trainer to do an overhaul in my workout routine, since HIT and other methods are required to increase it, my current routine is far from being ideal in this case, I need to exert myself more.
Also recommend visiting the endocrinologist to do all these blood tests… dermatologists are useless in this regard. And the urologist to do more exams.
sam ward says
Hey, what did your spermogram show?
Isotretinoin review MHRA UK – anyone can email them with their experience no matter where you live in the world. You must state for the attention of the Isotretinoin EWG and ask that you be listed as a stakeholder and that you be kept updated. Please outline all your concerns. They are mostly considering sexual dysfunction, infertility and psychiatric issues including spontaneous suicides and post the drug suicides. Contact email is Leigh.Henderson@mhra.gov.uk info@mhra.gov.uk Review date early February so please act now
Perene says
Hi, Perene here. Spermogram was normal, MRI to look for pituitary tumors, too. But on the lowish scale for everything I can’t accept. I am looking for natural ways to increase my T and libido. Low total and free T, low DHT, low estradiol (for a man = low libido), higher prolactin than expected, and lowish LH and FSH = all bad.
I’ll try Tongkat Ali, peruvian Maca, Ashwagandha, Tribulus, etc. all at once and a lot more measures to try improving my condition. Sadly ever since this COVID crisis started I had to postpone my plans and I am 2 years already not going to a gym. Will return sooner.
hidi says
I’m a femal, 31 yrs old now. I have sexual dysfunction since 7 yrs when I took accutane for 6 months. I have now zero libido & zero sensation. I cannot find any treatment and cannot marry.
I became like a robot without any feeling after I was very horny.
Traci says
I am Traci. I am 32 yrs old n was also on Accutane at a young age. My question is have u had children? I’ve been wanting to be blessed with a child but im starting to think Accutane is the reason i cant get pregnant.
Hidi says
I didn’t get married and never had sex..
donal says
Try meditating up to 1 hr every day or more if you can. Also gentle cardio exercise and hot baths daily to help your body relax. I had a reaction to saw palmetto, a 5ar inhibitor in supplement form and had all the same issues as guys who took accutane and propecia and some ssri anti depressants. I have seen a lot of progress in my recovery, it is all outlined in my website
http://www.5arinhibitorhelp.com/
Check it out i think it will help you. Men and women will benefit from regular meditation in dealing with this condition. You will only know what it will do for you if you try it. Try it daily for a few months , if it works for you keep doing it. Good Luck.
Kane says
I was never told that accutane reduces growth hormone and testosterone levels before taking it, 2 things I really needed at the age of 17. Derms need to stop sugar coating this poison and tell patients how dangerous accutane really is. The drug accutane destroyed my life please don’t take it.
kara says
My son was never warned of this either. The doctor spent a good 45 minutes going over EVERY other side effect, but not ED. It is not even a listed side effect. Six months in and now he is having “issues” that he never had before. It is terrible that this is not listed as a possible side effect when some studies show 25% of patients will have it.
RA says
Hi Kara, did your son get any better? Did you find any help?
r says
It ruined my life the same way. Became impotent at age 16, 20 years old now. I have felt DEAD for 4 years now. No energy in my body, aching joints, a penis that no longer works, a brain that feels severely damaged. Go look up accutane. You learn later that this poison they give innocent children that just want their acne to go away is actually chemotherapy designed for brain cancer. HOW DELIGHTFUL. DON’T EVER TAKE THIS POISON IT WILL RUIN YOUR LIFE. AS STATED ABOVE, YOU WILL NO LONGER FEEL HUMAN. I have hope though. I am on my journey to ingest cannabis oil because i have learned how extremely medicinal it is and believe it may just be the cure for all these horrible side effects.
M says
R could I enquire how this cannabis oil trial went?
Ivica says
If anyone want to talk about problem, erectile dysfunction, problems after taking accutane can do that on mail: axehector@hotmail.com, I have lot of experience about that problems, and we also can exchange some personal experiences what i really want to do. (Everything anonymously of course)
Regards
CILLA STEED says
Hi Ivica,
I am sorry to hear about your problem.
I would like to learn from you how you have got better please and your experience ?
Frank Cutajar says
Hello Ivica
I took accutaine when I was a teenager and my acne was very bad. I am now
81 years old. I got married at 40 and devorsed at 55. I had a sexless marriage
ED has bothered me most of my life. I guess it’s tolate, what a shame. If you have
any words of wisdom I would appreciate them.
Regards, Frank
Nick says
Please inform us about your current situation and if cannabis oil helped you
October says
Accutane has ruined my life. Accutane killed my penis is the best way I can describe how I feel sexually. Aside from impotence, I have very very low libido. Other severe and chronic side effects include: Major depression, anxiety, hair loss, dry skin, aching joints, and the list goes on. I cannot believe that the FDA would allow for a poison like this to remain available for so long. It’s because they care about the money, not your health.
Derms are ignorant, most of them. Google will provide you with much better solutions to your skin problems than any Derm can, one example is Acne.org. Do not trust someone with your health just because they wear a white coat. Remember, the reason we are all suffering these, very likely, permanent side effects is because we trusted our Derms in the first place.
It’s been 10 years for me without a resolution to ANY side effect that occurred as a result of Accutane.
I have not given up. I will continue trying to cure myself of these life robbing side effects. I have tried very many supplements and other protocols to try to heal my body, unfortunately so far to no avail; Sometimes Accutane damage seems too powerful. But I’m not giving in, and neither should you. We all need to work together and try different (safe) options to heal ourselves. And if something works, we CANNOT be selfish about it, we HAVE to broadcast the possible cure on the internet EVERYWHERE we can so that we can give hope to the significant number of Accutane victims out there.
Finally, DO NOT wait for someone else to provide you with the solution. Do some research, experiment safely – no more pharmaceutical medications! And try to find the cure to the possible indefinitely lasting side effects of Accutane yourself. Imagine there is no one out there but you, and if you don’t help yourself, then you will forever be trapped in a poisoned body.
We can do it. But we all have to do some researching and trials and errors with regimes, natural supplements etc., whatever we can to reset our bodies.
Get started right now. If we all waited for someone else to find ‘the fix’, then we will never recover.
Kazuar says
Hello
Have you found a cure for low libido after isotretinoin?
Luis caceres says
How did you cure your problem please let me know, I’m 18 yr old and I’m losing my mind after taken the med
Valid Luteen says
I’m not sure there is a “cure”, but you might be able to get somewhat better. You need to exercise. You need to drink filtered water. You need to stop eating so much grains and processed sugar. Start taking Standard Process. Symplex M + Wheat Germ Oil (every day) for mailes. Symplex F + Cataplex F (every day) for females. Clean the toxins out of your body. Take probiotics, rebuild your gut flora. Eat grass fed beef and free range eggs and leafy greens. Do the gaps diet. Do whatever it takes to rebuild yourself. Good luck. Oh and to help with skin blemishes, take Chlorophyll Complex and Cal-Amo.
Jackson says
I’ve never thought about the link of taking accutane and now having close to zero sex drive. I used to have sex everyday with my girlfriend and sometimes two to three times a day. Now I can count on one hand how many times I’ve had sex with her in the past 6 months. I thought maybe it was because I was so busy and tired with work and that I didn’t exercise enough. She is craving it and asking why I’m not like before. Is it because of the accutane? This crossed my mind several times already but after actuallly researching and reading other people’s story, I’m getting scared. Should I try seeing a doctor and look for treatments? My acne was very very severe and I was 25 years old. I’m very glad it cleared my skin out but… having sex, watching porn and having intense orgasm is something I deeply miss.
Ruben says
What is your age no. In my case was not severe i think because was onky 1 moth. I after some stomach problems stop take it. But the loss libido never the same. And much more dificult to mantain muscle mass. Take at 21 and now 39
Dylan Cronin says
I’m a 16 year old male that has always had a high libido and never had any problems getting hard, even off of just thoughts of women. I’m currently on my first course of the drug Isotretinoin, coming upon the end of my second month taking a 40 mg / a day dosage.
I have already noticed the size of my flaccid penis shrink. My boners are too quick to fade away. It’s never been this way in my whole life. Even when I was about 9. I was always able to obtain an erection with ease. It’s getting harder now, and I am noticing it. I’ve told my mom about it and she thinks I’m just being paranoid.
My next appointment with the derm is in 2 days. I’m going to give it a shot at confronting them what the little brownish-orange pill is doing to my body. My acne has faded a little bit, but I still get little pimples. All the cysts are almost gone. My penis doesn’t seem to be working the way it was before I was prescribed this drug.
I would take severe acne over a broken penis any day. Your penis is what makes you a man. Without it, what do you do? I’m not standing for that. I’m praying that stopping this early into the course will help me. I’m praying that it is not too late.
My girlfriend noticed it one time before we had sex and thought it was her. I didn’t know why that was happening until I thought of it a couple days ago. None of this happened until I took this drug. My flaccid penis was never as small as it has gotten in the past 2 weeks, and I noticed it. I started to worry about it. I decided to google it not too long ago, and to my surprise, I was not the only one.
There was story after story and post after post about people having the same exact problem after taking the drug Isotritenoin (Accutane). Most of them had these problems for over 5 years. That’s something I cannot live with. My sex life means a lot to me. It’s a big part of my life. I enjoy it. I can’t let a drug that I was unaware can cause such a destructive effect on my body do this to me.
I pray that I will not be effected as much after I stay off the drug. I’m quitting my course about half way into it. I pray it is not too late.
Good luck to all of you suffering with this problem out there.
– Dylan
dev says
have you overcome your problem after stopping treatment by accunate?
I am currently being treated by isotretinoin and observing the side effect you mention. plz reply cdev7060@gmail.com
John Doe says
I took it in 1981 when it first came out. I have struggled with ED my entire life for 40 years and these pharma companies need to be sued for ruining lives! I tried to take my life but got through it. It still sucks and brings me down daily as I still struggle with it daily.
JB says
I’ve got to share my story because hopefully it can provide a little hope to sufferers. I took 3 YES 3 courses of accutane starting my sophomore year in high school with the last occuring during college. From my junior year of college (20 years old) until recently (24 years old) I had many occurences of being unable to obtain an erection for sex HOWEVER I could get it up masturbating at times. This obviously really stressed me out and had me pretty depressed at times. By age 23 I had become content with a sexless life because there are worse situations in the world. At age 24 I met a girl who I fell in love with and almost ruined the relationship because I kept flaking on her for fear of failing in bed and her not liking me. I finally told her and I went to the doctor and got viagra/cialis. They worked wonders and after a while we began trying without them and HEY, with her patience and love, it fucking worked…I’ve been having drugless sex for half a year now. The pessimist in me says that maybe it was all mental for all those years but I had been having sex before no problem and lost it out of nowhere. The optimist in me (i’m an optimist) says don’t lose all hope because there are success stories like mine. Prior to this I did tons of research on this so I am no amateur to the plight, medical diagnosis, etc. If you have any questions you can email me at LeJclair101210@yahoo.com. I’ll be happy to try to answer any questions. Regardless, live life to the fullest even if you can’t have sex, there are other things that can bring joy in life and it could ALWAYS be worse.
Best regards,
John
Brendan says
John, your story and mindset is great to hear and inspiring…I am very happy you stayed optimistic and things are working out for you. I have Post Finasteride Syndrome, persistent side effects (sexual, mental, physical) from taking Propecia and appreciated reading your post. I am trying to stay optimistic and healthy in my lifestyle (diet, exercise) and just keep living life also.
Take care,
Brendan
Alice says
Hey everyone!!
So I chose to reply to this, rather than just post something because it was so relevant! The only difference is, I’m female!!
I was on Accutane and lost my libido. I had the hottest man (or at least I’ve always thought he is) and sex was great until I started the medication. Slowly, I lost my libido. What kind of 17 year old girl isn’t horny? It freaked me and my boyfriend out and we fought for years. You see, at the time I didn’t realise it was the Accutane, because even once I stopped the medication (because I got very emotional, aggressive and depressed) I was still not horny, even though all the other side effects went away quickly.
The great news is that, like John, patience is the answer. Except, even BETTER, is that I never went on medication. We just kept trying and using lube and one day he suggested we watch porn together. And since that day I’ve felt like my 16-year-old self (I’m 24 now). Yes it sucks and, if you haven’t taken Accutane, then don’t. But to those who have, don’t worry. All is not lost and it’s not permanent!! Just don’t give up. Because giving up is giving in, and you are NOT going to accept a life with no libido!! You can do it 😉
Hope this helps guys!!!
Peter Crisman says
My dermatologist just recommended isotretinoin for me to take for my cystic acne. Reading all this is completely freaking me out. I think I’ll try natural remedies first!
Shiv says
You are blessed for being smart to read this forum. Do try natural remedies. Major tragedy averted. Thanks to the internet and Rxisk. I would’ve killed myself too if I did not understand the reason for my symptoms.
Mohit says
Hi,
Did you experience ED after taking Isotretinoin?
Did you overcome it?
Please do let me know because I am facing similar problem and very worried now.
Thanks,
Mohit
Vivek Garg says
Hey,
I had been on 30 mg Sotret back in 2010 for just 2 months. Nothing happened for 2 years. After 2 years I developed sever back pain,( may be bcz of some other reasons.) However, alongside back pain developed knee and elbow pain as well. My Orthopedic had even done my CT scan to declare nothing is wrong. The pain was unbearable sometimes but is non existent away in the summers. And I am feeling pain just in 2 areas apart(from back offcourse) for a limited time.
My question is that even after 2 years of no effect at all, can this light doses of accutane still be the reason for my joint pain? The peculiar thing I feel pain only when I sit idle for long duration. So is my pain due to wrong lifestyle?
Kindly help in diagnosing this issue (as doctors are in total denial of any such link)
Dr. David Healy says
Vivek
Go into RxISK and enter isotretinoin and look at FDA reported side effects. There are nearly 1400 reports of back pain and more for back injury. So it certainly looks like back pain is possible, although whether delayed like this is less clear to me
David
Elizabeth Price says
My daughter had low dose isotretoin over a longer period than usual (several years) . This was prescribed by a dermatologist for acne. It worked for the acne but a pre-existing small benign tumour (a teratoma which often contains skin &hair) of one ovary enlarged over the following 2 years. This caused acute pain and she was admitted as an emergency to hospital where it was removed surgically. I think it is likely that the increased size of this tumour was caused by isotretoin.
Maria PT says
Painful joints are often dry joints. Connective tissue such as that found in joint capsules, ligaments and fascia must retain a certain level of moisture to be functional. Joint fluid must maintain an acceptable level of volume and viscosity. Accutane is notorious for drying tissues and body structures.
Gaby says
Hi,
I can’t believe how fool I was, not searching and learning more about accutane, before starting my treatment. This drug ruined my life. I was never the happiest person in the world, or an innate optimistic, but lord did I have a high libido. I neger had sex until I was 24, being raised in a very rigid and square fashion, my parents expected me to stay virgin until marriage! But, I started developing cystic acne, at 16. And tried everything u can think of,but it wouldn’t go away. I was 23 when I finally started on accutane, felt the wonders of the drug after the first two weeks of treatment. Even my bulbous tipped nose shrinked. I felt beautiful and my skin was flawless. Was too busy looking at my finally clear skin in the mirror , to notice the slow but consistently increasing signs and symptoms of what would change my nonexistent sexual life forever. I used to get wet just holding hands, just smelling the guy I liked, and even being oon the edge of orgasm while kissing passionately . All of this without ever having penetration. A I was on my last weeks of accutane I met a guy , lost my virginity and it was ok. Never had an orgasm for the 14 months the sexual relationship lasted. I thought it was due to the fact that he had a gf, and I fel used. I still could have great orgasms by masturbation.the relationship ended , I was still feeling aroused and excited at times , that I never noticed three frequency of sexual thoughts and desire were slowly decreasing, I wasn’t masturbating so often. In my lay teens an early 20s , I’d masturbate on average about 3-6 times a day, having really vivid fantasies I’ll come in no time! Idk if I should feel embarrassed about this , but is nothing compared to the pain I feel now, to admit that I am completely numbed in my genitals . I never have felt the pleasure of penetration, I didn’t realize that by the time I had sex for the first time, accutane had already ruined my sex life , before it even started. It’s been 9 years now , I have only had an other sexual partner, who is my husband to this day, and he thought because of my inexperience it was hard to me to adieu orgasm. The fact is, with his patience and love , I now can have orgasms by oral sex, manual stimulation and also using a vibrator. I apologiz for being I specific, but is necessary to explain every single detail, so no other women have to bear this heavy cross. It takes TOO much stimulation for me to achieve orgasms. In a scale from 1-10 i would say they are from 1-6, 6 being the strongest. But I miss the sky rocketing, mind blowing orgasms I would By masturbation , I wish I could have share that with a partner. I feel nothing with penetration, sometimes is painful, I have severe vaginal dryness, I used to have to wear protective pads , I had such a high sexual drive I would get wet at the minimum stimulus fom an attractive guy. Today, I barely think about sex. I used to orgasm from seating and peing on the toilet just with the passing of my uring caressing my outer lips, it would tickle, and then just thinking about penetration while peing , would give me my secret peing orgasms in no time. I was a lucky girl. Today all that is gone , and the only reason I find I’s accutane. I have no libido, or very low if anything, I don’t even feel sexual excitement while kissing my husband, Andes just like if something cut the nerve that provides sensations to my genitals. I feel mutilated, I hate myself for waiting too long to enjoy sex, cause now I understand that it is your right, and not even bad parents like mine, should have decide over your sexual rights, cause now it’s gone and I never even got to enjoy it with a partner. Don’t get me wrong, I can have an orgasm with so much concentration and working really , really hard on it, but that tumescent warm sensation of the blood flowing to my genitals, the pleasure of my outer and inner lips expanding in response to this increasing blood flow, that anticipation and desperate desire for penetration, and the certainty of crazy pleasure awaiting for me as soon as my vaginal walls would expand to host that desired hard penis, is all gone:(. I used to try to delay my orgasms, just in order to achieve even a more intense one, now, I am lucky if I can come once. Bland boring orgasms. Is so sad, that I try not to think about it, other way I’d be majorly depressed. Its hard to explain neat happened to me, but I did my best.
Please, please, stay away from accutane, try everything else but not this drug.
Gaby
Kevin says
Your problems with lubrication may not be due to accutane, have you had your estrogen levels checked or considered a topical estrogen creme? The hyperexcitability of your orgasmic response is almost suggestive of nerve entrapment either from a tarlov cyst, pudendal nerve in alcocks cannal, or from the musculature of the pelvic floor (check out a headache in the Pelvis). Changes in sensation on a toilet seat are classic for this. You may consider contacting Dr. Irwin Goldstein in San Diego.
Sunshine says
Gaby
Your story is the most accurate I have read. 100% true for women and it was Accutane that did it to me almost 20 years ago. I can remember the exact moment my orgasm started to fade as I was having it and it never returned. It was like a light being dimmed as the orgasm sensation slowly got weaker and weaker during that last climax and never returned. Dull light tingling now with full muscle spasms after orgasm so my body has responded to stimulation but the pleasure sensation of orgasm has diminished to virtually nothing. So unless a person is suicidal from having bad acne and it is life and death, my advice is: No!!!!!
Harry says
Hello everyone,
Enough of taking on Accutane. I am a victim too.
Please share the treatments that you have taken and the success in those treatments.
I wnat to know what accutane has done to me so that Doctors can the treat the cause.
Now all that my doctor has been giving to me is anti-depresents, nerve builders and viagra for sex.
It is one dimensional our problem is different and we need a different ED treatment.
Caroline says
You should look into the side effects of any antidepressants you are taking. Some (many) antidepressants cause the same thing.
Vi says
Antidepressants such as SSRIs are notorious for causing permanent sexual dysfunction as well.
Daniel says
Accutane IN MY OWN expierience made me very panic prone towards the end . Especially when on 2 pills a day . The problem wasn’t getting it up the problem was the mental state it puts you in . Depression , confusion , and a partial decrease in flaccid size and lack of normal libido. These aren’t permanate and I treated it by refraining from masturbation an let my libido get stable. Then I was okay . As far as anxiety goes . Once you figure out what causing your impotence (anxiety) you generally get a grip on yourself and cure it. I haven’t had any long term side effects after either .
Fernando says
HI guys! I just take four pills of ruacutan and instantly felt the effects in my erection and i immediately stop. BUT I COULD SOLVE THE PROBLEM BY EXERCISING THE PC MUSCLE ( The pubococcygeus muscle), IS THE MUSCLE BETWEEN YOUR PENIS AND YOUR ASS. PLEASE CHECK THIS ON THE INTERNET (http://www.wikihow.com/Do-PC-Muscle-Exercises) , AND YOUR SEX PROBLEMS WILL BE SOLVED, BE STRONG AND PATIENCE,GOOD LUCK!
Billy says
Many of these problems can be self induced mentally. For the amount of people that take accutane annually, these problems highlighted are few and far between. Maybe your issues are connected, maybe they are not. There is always a risk taking prescription medications, and one must weigh the potential negatives with positives.
In the study done by Sanchez and Dorantes, there is no conclusive affirmation of sexual dysfunction. They found 6 people…yes 6, that reported having sexual dysfunction in conjunction with symptoms of depression. Their symptoms of depression are likely linked with their sexual dysfunction. What was the sample size where they picked the 6 people from? The sample was 20 people, hardly a study to hang your hat on. Correlation is not causation, and in the abstract of the study the researchers suggest further research is warranted.
Do not fall prey to people peddling misinformation and hysteria to push you towards their products. “Has this study been ignored by those whose job it is to protect or at least inform the public of such a deleterious effect of this prescription drug?” No, the study has not been cited as it only highlights further areas of research. The author ends on this open ended question pointing to some conspiracy. There is even debate within medical journals on the cause of depression in accutane users. Questions arise to the causation, is it because of the initial breakout and side effects? Does it negatively cause issues within the brain? It is still being debated.
I highly doubt the researchers on the rxist team had any say in this article. As scientists, they would know that this article is nothing more than a simplistic look at correlation between accutane use and sexual dysfunction. Makes this entire website look like a sham. Makes me question the oversight by these “medical professionals.”
Dubya_B says
Sanchez and Durantes absolutely did not surmise that erectile dysfunction was secondary to depression, but that both were plausibly linked to Accutane’s unintended effects on the central nervous system.
The study included a control group being treated with an antibiotic.
…All of the patients had acne!
…but the rate of erectile dysfunction was “extremely” higher in the group taking Isotretinoin. Patients were also pre-screened for depression, erectile dysfunction, and testosterone or DHEA outside of normal bounds and they were excluded before the study began. Not a study to “hang your hat on”, but certainly a red flag.
This article was also never intended to be conclusive scientific evidence, but patient narratives and correlative studies. The product being sold here is a cautious approach toward a controversially dangerous acne medication.
Attacking another’s professional integrity based on misconceptions is a bit harsh.
Sunshine says
Piss off with your bogus peddling! We have talked about it for years and have been ignored, The medical/pharmas have prescribed meds which deformed babies so get your head out of your ass that the research doesnt stack up. We, the people who took it know better!
Real story says
I am a healthy, not depressed 42 yo male. I took my daughter in for a consultation on isotretinoin because it had cleared up my other daughters skin so well. They recommended holding off to make sure insurance covered it. I shared some issues I was having and they suggested I try it. I did and and within 9 days I began to feel numbness in the head of my penis and erections became impossible without hard almost rough stimulation and were lack luster even then making actual sex impossible. Here’s the kicker. I had started Testosterone and HCG therapy two months prior. Not for erectile dis function but for mood and low energy. So leading into this isotretinoin treatment my T levels were well over 850 and I was having erections often and more rigorously then I had when I was in my teens and early 20s. So my wife asked if perhaps it was the isotretinoin which never had crossed my mind as it was never mentioned but sure enough there have been connections so I stopped and 3 days later I was back to normal with a slight numb feeling in the head of my penis but only partial. That is pretty obvious to me and I guess I could try and take it again to replicate but clearly not worth the risk. Now I am scared my oldest might have issues but hasn’t shared them. That’s going to be a hard talk. Part of me is thinking maybe I shouldn’t. I don’t know. Just my own experience take it as you will.
Anna Nim says
Billy, Your comment is dangerous (yes, I know it is years old). No, the sexual issues are not mental. Nice try to be in denial and blame the victims. This drug is the devil and unsafe at any dose)
Peter says
How does one weigh the risks of taking accutane when sides like sexual dysfunction are not even listed as a possible side effect. Pet scans on the brain of accutane patients have shown massive changes in brain activity. Accutane has been shown to significantly reduce dht synthesis in the skin by 80%. If you think serious changes like this cant effect someone’s mood and sexual performance then it’s you falling prey to misinformation.
However I don’t need studies or bullsh*t docs telling me what accutane has done to my body, I lived it first hand and never been the same since.
K says
My fiance took accutane for about 8 months. Its about to ruin our relationship. I was with him every step of the way. Trying to support him and help him through every heartbreaking side effect he experienced. He’s been off of accutane for almost 8 months. We’ve had sex once in the past 7 months. The feeling of rejecton that I have is almost unbearable. I haven’t found many support forums for significant others of those who have taken accutane, and no one really understands it when I tell them. I’m so madly in love with my fiance but how do I have a healthy marriage without any intimacy, let alone the mental state I’m in after feeling unwanted for so long? I want to be there to support him thru this and maybe I’m a terrible person for bringing light to what significant others experience. Accutane and all off brands need to be banned. The fact that dermatologists still prescribe it is unbelievable. My heart aches for each and every one of you that have personally gone thru the accutane process. I don’t know what’s it’s like first hand, but I’ve seen the consequences and I know it’s difficult.
Samantha says
K,
Seems we are in similar situations..
I am a victim to actutane and suffer low libido and dryness regardless of my yearning to be intamite with my boyfriend. I have tried numerous lubes but just want to feel sexy again and enjoy sex with out lube. My boyfriend recently told me something is missing because of our lack of sex, which killed me because its out of my control. He feels I am not attracted to him and wants to feel wanted- know that is not the case with your fiancé- I was just being insecure and avoiding the elephant in the room. I am going to a holistic dr to have my hormones checked and start natural therapy. The best advice my therapist told me is to “get to know each other again”. Intimacy isn’t just sex.. Cuddle more, kiss more, hug more – anything but sex (for now) because his erectile dysfunction can also be mental. Try not to focus on the negatives be positive and work on natural resolutions for now.
K says
Samantha,
Thank you for your message. We have since gone to counseling. Our first weeks homework was to hug 30 seconds a day. With that he became more affectionate, but that last only a week. I’ve been begoing him to make out with me for several months now, but I can’t even get that. I haven’t given up yet, but it is so tough. He’s been on T shots for months now, but those haven’t worked. Its added so much stress to our relationship, but we’re both still hanging in there. Hope you and your boyfriend can too.
K
Wife says
My 40 y/o (midlife crisis?) husband has been on Accutane probably for close to 8 weeks. We have been together for 6 years, have 2 kids (one is just 3 mos. old). We’ve had our ups and downs throughout, but we got married 6 months ago and it was an event HE set up completely with a special judge at the courthouse, included our 5 y/o son as the ringbearer, and invited his childhood friend and wife to witness. This was not a forced occasion on my part. We’ve since had notable close/huggy/intimate moments and I felt more settled in our relationship than we ever have been (granted, I was still uncomfortable and pregnant during this time). Come early December last year things seemed extra snappy and weird. The hubs is a like-clockwork, staid guy. Noticed he was drinking heavily during the month (4 bottle boxes of wine every 2-3 days, not kidding). Then after the holidays were over he sits down and tells me that we haven’t been getting along for a long while and wants a divorce (!!!!). I still feel totally blindsided and am trying to figure this out. There was no putting me on notice or saying there’s problems, we need to try to fix this, go to therapy, NOTHING. He is as cold as ice and no one can talk any sense to him. So while I initially thought of the classic OTHER WOMAN (especially the fact that he decided to get on Accutane to begin with), these last few weeks since the big D-bomb he has pretty much been home, but still obstinate towards me and this whole situation. He “turned me down” for the first time ever Christmas evening. In December he usually has a fair # of work Christmas parties, but did have some extra nights out (which is why I still sorta entertain other woman, but overall Accu-induced personality change?). But these last few weeks since the D-bomb was dropped on me he has pretty much been home like usual (could still possibly be a potential work honey, who knows?). He says he can’t / doesn’t trust me and just seems overly paranoid (which also could be classic cheating projection). I don’t know, but all of this is behavior is so left field, weird, and incredibly final for no good reason. I initially questioned the Accutane prescription when he started taking it because of negative stuff I remember hearing about suicides in the media in my teens/20’s, but let it roll. Then weeks later, BOOM, divorce time! I am getting ready to move out of our place in a few weeks with the kids and am confused reaching for straws here. I Googled “Accutane affect behavior” and all this mostly negative information comes up. My next place will be a short term lease in our town so that our son can finish out kindergarten. I am preparing to move on, but am wondering if things level off chemically in the body with the Accutane at the end of the treatment period. I am not sure exactly how long he will be on it, but am assuming, worst case, Spring. He truly thinks there is nothing wrong with him or this whole situation he has set forth, so I doubt he will quit the meds cold turkey on my request. His was not a face affliction (only here and there), mainly neck and back acne type stuff, but he’s had problems since he was a teenager. This is all just so odd to me. I can actually accept another woman at this point, but if our family is breaking up over some stupid acne drug, or it’s a combination of one feeding into the other, I guess time will only tell. Am just wondering here if anyone else has gone through something similar.
Sunshine says
what happened since
Jay says
I suggest you ask him to take Pshot and get gainswave .
Anon says
Hey guys,
I’m 18 and had tried everything else to clear my acne and didn’t work so did accutane. I am always happy and stuff so depression is and was never a problem. However I have this erectile dysfunction too and don’t know what to do especially im at uni now…did u guys speak to UR dermatologist about it or GP?! I have to make an appointment soon to see what they can do?
Also anyone who has found stuff that has permanently treated their issue can they put it on here would be nice. Keep the hopeeeee guys :)))))))
Dr. David Healy says
Dear H
Accutane can cause sexual dysfunction. This will often clear on stopping. But probably better to stop sooner rather than later. The key issue is whether it endures after you stop. If it does, at the moment, we don’t know of a cure. We’re working on it.
It would be great if you can file a RxISK report and take that to your dermatologist and see what s/he says. Point them to this post as well. If you have a good doctor and can engage them with this issue in finding a cause for the problem and an answer to it it would be wonderful.
The more people who recognize the problem and get involved in trying to find an answer the better for all of us. There are likely to be links between this and PSSD and Post-Finasteride syndrome
DH
Anon says
Doc,
Can u help me out. I’ve been on it for3 months with 40mg first two months and 70mg on the third month. I have been experiencing this ED since after the first month… What do u think is the best decision for me now to do? Once I went and spoke to one of the dermatologists and he was like it’s not a side effect on the official thing and he’s never come across someone having it and he said it could be psychological. I very much doubt this now…. I’m great state of mind think it’s physical im 18 don’t want to ruin my life just for this treatment. My face hasn’t even cleared up yet. Can you tell me what I should do? I could speak to different demr? More importantly..Shall I stop the treatment?
THANK YOU
Dr. David Healy says
Anon
We don’t offer medical advice. We will give a view about whether a drug has caused a problem or not – and Accutane certainly can cause enduring sexual dysfunction.
Has it caused this for you – can you fill a RxISK report and take to your doctor – this gives a score to indicate if its possible or likely that it has caused it. Give the RxISK report to your doctor. If you have a doctor who listens this is the best way forward. Either way can you report back – we are keen to hear about doctors who listen and doctors who don’t.
Best of luck
RxISK
Daniel says
Hi everyone
I’m an 18 year old student who’s been suffering the curse of acne for the last 5 years . I have tried every single thing , you name it . I was so tired of everything not working and my face just kept getting worse . Extremely red blemishes and large pimples it was to much for me to handle . So I was prescribed to go on Roaccutane last September but due to my exams coming up I started taking them the first week of December 2014 . Before taking it , my libido was on point . Never had an issue with getting an erection , now I feel like my body is an old man I can even get the normal morning wood my sexual activity as drop drastically and it’s so bad . I only been on it for two month and saw it and consulted my Dermatologist and now I have stopped all treatment . Praying that I’ll get my body back
Anon says
Mate I’m in a similar situation to you.. Nearly exactly the same. I’ve been on it for 3 months now shall I wait one more month as I have my appointment or go consult them now and stop it coz iheard it ain’t good to stop in the middle of treatment?
Mohit says
Hi,
Were you able to get back to normal?
Thanks,
Mohit
Mike says
I’m 25 now. When I was 19 I took Claravis for 6 months. Since then it’s been a never ending battle with lack of sex drive and not being able to get/keep errections long at all. I wish there was more focus on this like the ipledge crap for birth defects. I’ve tried everything except ED pills. Just wondering if we can file a lawsuit or if it’s frivilous?
Carl says
I took accutane for 6 months at the age of 15. I am 34 today and had ED and loss of libido ever since I took Accutane and that is 19 years ago! I am fully healthy, well trained and all possible physical tests are normal, a bit low testosterone but still “normal”. Hope there will be some solution in the near future to reverse the side effects.
MB says
I’ve been on Clarivis for about 8 years on and off. I started in my early 30’s and am now 39. I’ve never had nodular or cystic acne, but what I did have was an extremely oily complexion that traveled down my neck. To a lot of you this will sound excessive to take such a drastic and controversial drug. To me this was just as crippling as the acne so many suffer from.I knew some of the risks associated with Accutane and had many friends/family who had been on it at one time. Oddly enough I still view it as the miracle pill, it not only cleared my face but it’s like the fountain of youth, but with anything so amazing there’s another side.
I was only prescribed 10mg 2x daily, but after a few weeks I realized 1pill was sufficient and I had no side effects, and a back stock to keep me going, it was amazing! I’ve voluntarily been on 4 different 5mo. rounds of treatments over the lat 8 years and to date have about 15 pills remaining.
Additional I also suffer from OCD, cleaning issues specifically. I sought treatment last year and was started on Prozac. Because apparently the chemical imbalance you have from this is treated with anti-depressents. I was actually more apprehensive to take Prozac because of lack of sex drive and ongoing tiredness associated with the med. The birth defects and depression side effects never worried me with Claravis.
I noticed a significant decrease in sexual libido, and female dryness over the past 2 years. None of which had been an issue previously. After reading many different stories, articles, and literature about Accutane products I am leaning more toward the fact that this very well may be of my own doing by taking Clarivis. I’m not saying there can’t be other factors,but this has been with me for 8 years and Prozac was only for about 7 mo. I thought after stopping things would improve, but it’s been a full year since I’ve taken Prozac and I’ve only had maybe 4 Clarvis pills in that same time.
I’m looking for any advice female patients may have, moving forward. I’m uninterested in judgement, or looking back. I remain positive and focused on making the most out of my sexual future however I can. If you have any suggestion/ advice it would be greatly appreciated. Specifically what type of doctor you may have consulted first, PCP, or Gyn.
John says
I am 48 and took Accutane when I was 19 for a few years. About 10 years ago I noticed a lack of libido. I could not reach orgasm while masturbating. I then noticed when I had sex with a woman that I had ZERO feeling in my penis. I could not tell I was inside. At first I thought it was the girl until after a few other partners I realized I had the same results. I saw 5 different doctors and no one had a clue as to why I was having this issue. My testosterone levels were low so I take Fortesta and use Viagra. Nothing helps and now I don’t date or even enjoy life. It really is horrible. I came upon this thread while researching.
Matthew says
I am in the same boat as all of you and have been searching for over 10 years how to reverse the lifelong effects of this poison. I was given 3 cycles from ages 15-20. Overall skin is worse, prematurely aged me and ruined my body and life. Something needs to be done I’m tired of waiting for a cure that will most likely never come. Action needs to be taken against the company and doctors who give this poison to kids who just want clear skin and have no idea that it is going to rob them of their lives.
harry says
Im a person who took roaccuatane and I never linked severe abdominable pain to this drug. I was young naive and took it because of my skin doctor said so. I didn’t have anything happen while i was on the drug and i made sure my dry skin was covered so a not to get cancer. I started to get massive painful cramps in my stomach when i was in my late 20’s which lasted into my late 30’s and are now thankfully gone. I also got a racing heart condition which to this day is undiagnosed. My stomach pains were undiagnosed and i was also referred to a pysychiatrist as well. My family have thought i was mad most of my life since this drug also. I also get random sexual disfunction not always just sometimes which is annoying. I have also always been passed over for promotion in my job all the time since roaccuatane.
R says
hi,
i just read the entire blog. i had taken this isotroin two years back. within two weeks i felt my sex desire going down. i stopped immediately. i m fine now. there is a remedy to come out of ED. it is a home remedy and traditionally followed in india. follow this: take handful of drumstic tree leaves and its flowers. clean it. then, along with this add small size onion chopped, then pepper(powered, less quantity, just for good taste). boiled them with water (half litter). all essence would have extracted. just have this juice everyday in the morning or evening. you can take this as many times as you want per day.
secondly, to purify your blood from all sorts of filthy medicine stuff, take fenugreek (20gram) soak it in water for 3 hours and have it with that water(would be bitter little bear it). you can take this twice a day.
within two weeks you will get erected when you see just chicks. you need not spend more money for drumstick leaves. 0.0% side effect. good for health to build immunity too.
there is a way for everything. dont worry. this will definitely work. at least you can give a try for no cost.
cheers
KVN says
I just used accutane for a week and have already stopped using it for a week up until now…I am able to get erection but it won’t last long as normal and its hard for me to get hard…I’m still try to find way to fix it….I went to doctor and he wanted me to wait a week more to get a medicine and picture for him to analyze more….I also went to other doctor and he said probably im depressed without realizing it…however I also depressed after using it
zheni says
R,
I could not understand exactly your instruction with the moringa (drumstick tree).
Is it the leaves and petals or just the petals – you said ‘you need not spend more money for drumstick leaves’ or did you mean, if fenugreek is drank, them moringa altogether is not needed?
I also wonder if just moringa tea can be taken (I suppose it is made of leaves only)?
I am a female Accuatine taker and I shall to lower the dose and take the moringa or keep the libido damage to minimum…
matthew says
I took accutane at ages 15, 17, and 20. I’m 30 now and look 16 but feel 60. Every side effect you can basically list I have. Stunted growth extremely dry skin, joint pain, eczema, foggy brain, no muscle, attitude change no motivation, cant gain any weight, sexual dysfunction, hairloss etc.. i also noticed something wasnt right compared to my peers. Doctors and everyone else telling me there is nothing wrong and to just be patient. Well I got educated from research many years ago praying that something would cure us. Seems like this drug destroys cells along with your body with life long lasting side effects. I have taken every supplement and other plans of actions to help without avail. If the doctor had told me this was designed as chemo drug and the side effects would be with you for the rest of our lives, then no way would i have taken it. Both doctors and roche are to blame for ever giving this to a kid who hasnt developed. They should have to use the billions a year they made off it to research a way to reverse it, if even possible. Everyday above ground is still a blessing an many others have it worse, but you cant help but think how different your life might have been had you made better decisions in your younger years and that hurts every time. Much greater awareness needs to be raised.
greg says
Hi
I took roacutane while i was 19. Before then i was normal in every way. Since then i have had many serious gay thoughts. I have slept with many men as their girl. I have been bedded by many gay top men for just casual sex. I attribute this fascinatin with roacutane. I have never been cured and still sleep with men so they can have sex with me all the time. i am a gay bottom after roacutane. i have been gayed and screwed lots by men.
vishwa says
I took Roacutane after i had many other prescriptions that didnt work well. It dried my skin and made me feel lethargic. My doctor said that was normal and would stop after a while at the end of the course of this treatment. Around 6 months after the treatment I noticed i wouldnt always get an erection. It was on and off and sometimes went small during the intercourse. My doctors could find nothing to indicate a problem so i have lived with it ever since. Sometimes i cant and other times its very good. My normal actions are gone and replaced with irrational physical goings on. There is no cure. Dont take roacutane guys you will regret it.
Paula says
I was given this drug in 2010 for a few pimples. During the course I experienced low libido, genital numbness, joint and muscle pain, and dry lips. Five years later, all of these symptoms have worsened in addition to other symptoms that began one month after stopping treatment including digestive problems, dry and thin skin, dry hair, hair loss, tinnitus, muscle spasms, hand and feet numbness, chronic fatigue, memory loss, and an overall feeling of not being well. Dermatologists need to be informed and not hand this stuff out like candy for mild to moderate acne. If they do, they need to warn the patients about the possible permanent side effects. I was told that none of the side effects were permanent, except if I became pregnant, there would be possible permanent damage to the fetus and I would have to get an abortion. The permanent side effects are definitely not worth the risk.
Ed says
Hello, I am a 20 year old male from the United Kingdom. In 2014, I decided to give roaccutane a try for my treatment-resistant acne. The acne was not cystic, but it did not respond to antibiotics. Before seeing a dermatologist, I did a lot of research into roaccutane and decided that the benefits outweighed the risks. Little did I know, I was about to make a very big mistake. As a precaution, I only took roaccutane for a short amount Of time (1 month course-40mg per day). By taking it for a short amount of time, I thought I would be avoiding long term side effects. How wrong was I.
Towards the 4th week of my course, I started to notice I was depressed, and my sex drive was greatly diminished, and found it difficult to achieve an erection (even with a hot girl). I thought these effects would be temporary, but I stopped taking it just in case. And to my absolute horror, the side effects persisted. My penis when flaccid has reduced in size, and has a “shrivelled” appearance. However when I do eventually get an erection, I find it difficult to reach orgasm. I have also noticed a decrease in my ejaculatory volume. At the young age of 20, I feel like I can’t go much longer living like this. Having depression is one thing, but having a dick that hardly works is just ridiculous. It’s been 9 months since I took roaccutane, and I have to say, my life hasnt been the same since.
To combat these effects, I have tried a combination of supplements and have had some improvement. But by no means a “cure”.
-5HTP
-vitamin b6
-niacin
-magnesium
-Horney goat weed
-L-arginine
If anybody would like to talk about this issue, I would be happy to do so. You can email me: henthornedward@yahoo.co.uk.
Some days, I have been very close to ending all this bullshit. but the reason I am still here is because I love my family, I don’t want to put them through that. But I honestly don’t think I can continue much longer like this. For the past 9 months, I have literally been hanging on by a thread. The amount of misery this drug has caused me is hard to put into words, but hopefully together we will find some way to get through this.
Bill says
Hi Ed. There is a thread on acne org called “Repairing Long Term Damage From Accutane”. Until post-Accutane sufferers have a proper forum, this seems the best place to gather to discuss finding ways out of this.
Ed says
I only took roaccutane (isotretinoin) for 1 month. does anyone know if this depression/sexual dysfunction is permanent? it’s been 9 months since I took it and there has been little improvement. I took it for such a short amount of time so I’m hoping this will all go away given enough time.
Michal says
This is the most worst side effect people suffer by using accutane drug.
John D says
This is complete hyperbole.
No one would usually bother to read the journal references the author included, and so they add an air of legitimacy to the article that is not contrived. If you do bother to read the supplied articles, you will see that there are two cases of sexual dysfunction associated with Accutane among females reported, and a few more cases of erectile dysfunction. The odds are overwhelming that these effects have nothing to do with Accutane, given that sexual dysfunction affects a huge subset of the population (minus medication). These numbers are so minuscule, and the results have not been replicated properly, and this drug has been on the market for some time now.
All large-scale, blinded, and/or well-designed studies show that Accutane is highly safe with the exception of its teratogenic (birth defect) effects, something that only occurs in patients who are not responsible or who are not educated (i.e. do not take the necessary precautions to ensure that a pregnancy does not happen while on Accutane).
There are more risks in taking long-term minocycline (antibiotic) than Accutane, which most GPs have no problem prescribing to teenagers and young adults for mild acne (and virtually no one criticizes GPs for this).
In sum, sensationalism is fueling the media reports on Accutane rather than evidence-based science. Even some GPs are fooled my the nonsense that is heralded in innumerable media stories––either that, or they are afraid of law-suits based on a few testimonial reports rather than real data.
Dr. David Healy says
This response sounds very like Formerly 98, John Alan Tucker. Formerly 98 is mentioned in several earlier posts about PSSD where he was involved in removing the Wikipedia PSSD page. He has also edited out of existence almost any reference on Wikipedia to the side effects of drugs like the Fluoroquinolones and Olanzapine.
While there is an appeal here to science and controlled trials, the likely driver in Formerly 98s case and perhaps jdlkm1234abc may be something much more anecdotal – perhaps a sexual difficulty at some point earlier in life – from which a conclusion has been drawn that all that is involved with SSRIs, Finasteride, or Accutane is what happened to him. Anyone can have sexual difficuties – this is true. But these difficulties are rarely accompanied by profound genital anesthesia – whereas SSRIs for instance produce very clearly and demonstrate genital anesthesia within 30 minutes of having one and this provides the basis for their marketing authorisation for premature ejaculation. Accutane is also a serotonin reuptake inhibitor
David Healy – aka 666 or jdklm123456789abc
James says
To assume that trials always pick up on every side effect a drug has, is incorrect. I can personally assure you, that this drug causes sexual dysfunction. You only need to look at other 5 alpha reductase inhibitors such as Finasteride. Studies on this drug clearly demonstrate that it can have lasting effects on users, it has been shown to effect protein expression in the Nucleus Accumbens, an area highly involved in pleasure. Now if this drug which works as a 5 alpha reductase inhibitor can do this, its not too hard to believe that its plausible, that Accutane, a known potent 5 alpha reductase inhibitor can have similar effects.
Sexual Dysfunction is common, this is true, but sexual dysfunction lasting years is not. I have experienced sexual dysfunction for the last 10 years. Trust me that, persistent sexual dysfunction is different to sexual dysfunction. No amount of sex therapy is going to fix this. But I implore you to give this medication to your teenage son and daughter, and we can see if after 6 months, you still hold the same viewpoint.
James B says
So on one hand we have a lot of people informally reporting the same effects on their body all having taken Accutane or a generic form. On the other hand we have very few scientific studies to support the link between the two. Could the fact that there are few studies supporting this be because there are few people willing to study it for fear they might find out the truth?
danger drug says
Hi I’m a 37 year old married female. Went on Roaccutane over 20 years ago for about a year. I was completely normal one minute and not the next-major extreme in difference. Normal libido and orgasmic before the drug to low libido and never orgasming again. I thought something seriously got damaged with my privates or something. Every doctor i went to said its all in your head blah blah blah but i knew it was total rubbish. Its only the last year from watching a tv program about others having the same symptoms that the lightbulb totally went off that it was the drug that did this to me as the timeline from when it started happening is smack on. I’ve learnt to live with it but i feel like myself and my husband have been robbed. I would love a cure. Only people that have this understand. The people that say there is no proof that this drug did this would think differently if it happened to them. It seriously does something wack with your nerves and brain that they haven’t pinpointed just yet but trust me it DOES!
N Z B R Z says
Antecedent:
I was only 18 when I have become it: I had a beautiful girlfriend, I was very happy -my libido–oh my God…! it was so high that I need to ask God to reduce it in a way….SO!
After Roaccutane:
But I had very-very acute Acne conglobata…. I became Roaccutane two times, 2 courses – this was terrible, my father – I remember, asked me – what is this?- I had bloody hematomes on my lips, and I tried to set him to ease, this all is a treatment…don’t worry!
My libido:
After the second time I become Roaccutane- I fell to the other side of the horse..dramatically. My girlfried had done with me…!!! It was off!
Therefore you kindly readers –> Be care with Roaccutane! This is not only a Vit-A version.
Just wait and see!
How can it rebuild/reset the sexual life after Roaccutane? Forgetting viagra and ciallis, others?
K says
Not to make light of the matter, but doesn’t having bad skin (i.e. acne vulgaris) also kills your sex life?
Take accutane, clears skins, but kills your sex life.
Not to take accutane, grotesque skin, puts people off, also kills your sex life.
To take or not to take, that is the question.
Anna Nim says
Um, are you joking? Clearly not to take. Don’t be so vain that pimples kill your sex drive or worse, cause you to take a medication that will PERMANENTLY kill your entire body, including your penis…
sufferer says
27 took Accutane when 16 for about a year. Told no permanent side-effects. Was healthy and extremely energetic prior to Accutane. Family has no medical issues too.
Once I started Accutane I got:
Depression
face dryness
Facial coldsores or the like
lack of libido
nose bleeds
After the treatment within one year I developed (and have to this day decades later);
sebhoric dermatitis
dry eyes
dry skin
eyebrow hairloss
head hair loss
continued nose bleeds
joint pain leading to injuries
back pain requiring chiropractor (asked if I had been in a car accident after seeing x rays)
blushing
anxiety
more depression
Erectile dysfunction (soft even when erect)
extreme brain fog / can’t concentrate
short-term memory is real bad
I was only young at the time. Now I think to myself this: how can the drug permanently get rid of the acne without permanent side-effects?
You are in a small concrete room with only one opening. In this opening your food, oxygen and many other things you need appear. You are very happy aside from the fact that mosquitos also enter from this opening. They bite you every night…all night. You use the telephone next to the opening to call for help on this matter one day. the operator says he has fixed this issue with many other people and it is as simple as constructing a brick wall to block the opening. he says you will experience temporary shortness of oxygen, food and other benefits but after the wall is constructed they will all come back to their normal rate. He provides you with the bricks, which he places in the opening, one brick per day as well as temporary air cylinders and food packages. After some time the wall is nearly up and you are happy the mosquitos have dwindled in number. You place the final brick and the mosquitos stop. You are extremely happy and are now just waiting for the oxygen, food and other benefits to return. Then it hits you like A BRICK IN THE FACE…how could I have been so stupid… the mosquitos came in the same opening that all those other things did…what have I done. You gasp for air as you start banging on the wall in an attempt to break it but your hands are too soft… You call the operator and ask for a hammer but he says the opening is now closed and he does not know how to send one to you. You tell him you are finding it hard to breathe and the air cylinders aren’t good enough and he says it is all in your head and that you should be glad the mosquitos are gone.
What is abundantly clear to me now is that my acne has never come back which means these side-effects will never go away either. I would actually be HAPPY to see my acne come back.
Some successes I have had (no permanent relief just temporary bandaid solutions);
Burning the veins within the nose to reduce nose bleeds (not allowing them to dry out).
Taking Viagra has helped increase the strength of erection slightly…enough to allow for penetration.
Gently rubbing of 1% pyrythion zinc into eyebrows with tooth brush to clear sebbhoric dermatitis
Eating less sugars and fats
Moderate weights and cardio (if I overdo it I injure myself).
I would like to say for all those people who say this is all in our heads. Maybe one or two of the symptoms might not be related but to go from a perfectly healthy person to a person with over 25 ailments in the space of one year is not normal. To go from being able to memorise complete essays word for word to not being able to remember where I put the keys 5 mins ago, all the time, is not normal. One day I hope that the company will be made to pay… I am sure if we all get together we could make a class law suit… thousands of people with similar permanent side-effects (which were supposed to be temporary) is too much to brush off as coincidence. if the maker of Roche thinks otherwise than I would ask him to feed himself or his kids this poison to lay the issue to rest once and for all.. if he believes all the side-effects are only temporary he should have no issue with this.
Finally on a note of hope. Even with all this side-effects I am still trying to move on with my life. I exercise whenever I can as that improves my mood (and my body). I keep thinking how other healthy people have it much worse and are being killed every day and starve to death. The Viagra also helps. It is not a complete fix but even that small amount that it helps gives me some happiness. For those others out there who are finding it hard to cope just keep remembering that there is always someone else who has it worse off than you and has the courage to continue. Find hobbies and things that interest you and pursue those. I have learnt not to care about what other people think and to do things which make me happy. I have pressure at home because I struggle at university (due to the side-effects. Mainly anxiety). My family only wants the best for me but they don’t understand that I am incapable of certain things now, and having all these side-effects (many of which they are unaware off) has really put things in perspective. They want me to get married have children and get a good job ( my family is well-off and hard-working but I feel place too much emphasis on money and looks). I don’t have time for this I just want to enjoy the limited time I have left. Once I finish, if it is in gods will, I will be moving overseas, possibly to China, to live a life how I want to. I will find a modest job and just enjoy every day doing what I want to when I want to. I will stay in contact with my family but i will live my life how I want by making money to live not living to make money. I am gratefull my joint pains and back pains have been slowly improving with exercise.I anticipate my body should hold up relatively well until I am at least 50. This gives me over 20 years to enjoy myself, meet new people and just live. If I meet a women who understands me and loves me for me then maybe i will find love. I should also note that I am gratefull for the 16 years of life which I thoroughly enjoyed and lived to the fullest prior to Accutane. Good luck to everyone, keep your chins up and just plodding along..we are all in this together.
bilal nazir says
Hi mate are u from the uk?
have you gone china yet?
i also took accutane and now feel the same?
please reply.
thanks
Manalese Nicola says
I was on Accutane at 16 years. Now I’m 22 years old, and still have the same sides. Erectile dysfunction and hormonal Problems the worst of all. Another Problem of us is the ignorance of the doctors, they say its in your head (Fucking bullshit). I can only say, do not take this drug, its dangerous and the sides can be permanent (I never give up and fight on myself) Don’t go to doctors anymore.
Mark B says
The doctors and drug companies are working together. I was given this drug in 1986 when it first came out at that time they knew it caused sterility in male dogs but told no one, now at 40 my testosterone levels should be around 650 to 725 instead its 228 and I am completely sterile after many genetic tests no genetic cause for this was found, no one in my family on either side back four generations had any of these problems. Clear skin was not worth losing the ability to someday be a father!
Chris says
Well, I never thought I’d ever share it, but yeah.
Accutane destroyed my sex drive.
It’s not that I can’t get hard or anything, it’s just that.. When I start fucking my girlfriend, I don’t last long at all. I can barely ever get her to come and it’s pretty hard on my self esteem.
Regardless, I’m not going to die from this, I’ve been through worse.
However, I completely recommend AVOIDING ACCUTANE AT ALL COST.
You’d rather have problems with sex than having acne?
That’s the worse mistake you can ever make.
That’s.. The worse mistake I ever made.
My acne did go away – not completely, but it did prove to be very efficient after a little over than 6 months.
Regardless, it was not worth it.
If the only reason you want to get rid of acne is to get a girlfriend or a boyfriend, then you’re an idiot.
Your acne will go with time, and a girlfriend/boyfriend that loves you for what you LOOK like will also go with time.
Your partner is one that will love you for who you are.
The decision is yours to make, sure, but at least mark my words, and let them have an influence on your choice.
Thomas says
I took acutane through most of high school, and I’m 20 now. I stopped and haven’t taken any acne medication (topical only) of any kind and I still feel like my erections aren’t as strong and long lasting as they should be, I can never stay hard for more than 5-10 minutes with my girlfriend before just losing it completely. Doctors told me I was too young for ED, and I ordered some samples of Viagra from a Canadian pharmacy. Now, I can just take a tiny dose, like 1/4-1/2 of a pill, and be ready to go completely in a few minutes. Just using it a few times helped me get my confidence back, and I don’t really use it often anymore, just super helpful in getting over it initially. Anyone else ever order viagra or any erection drugs online with any good results?
Brendan says
Thomas, I would try herbal supplements, L-Arginine and Niacin to help improve blood flow. The urologist I went to gave me a Viagra prescription through this website because it was cheaper: https://www.healthwarehouse.com/
But they do require a prescription so it is legitimate and safe. If you really want Viagra I would explain your situation to a doctor, write down your side effects if necessary or print out a study, and they should be able to give this to you. It’s cheaper through the site I listed.
ahiio says
Im taking acutame now , 4th day .. Im 20 yrs ild , should i stop?
Brendan says
ahiio, It’s obviously up to you but I would stop because I do not think the risks are worth it for your health just for something cosmetic. I have post finasteride syndrome (ongoing side effects from taking the hair loss drug propecia) since 2007 and it has been life changing, physically, sexually, cognitively. It isn’t worth taking a medication that may alter your hormones. Your physical, sexual, mentla health should come first before clear skin or a full head of hair. These medications affect everyone differently, but the potential they have to change your body is scary and not in the marketing campaigns.
ghulam says
i take these medecine not accutane but isotretinoin. im so worried now. my erection much low . and my desires low . what should i do now plz plz plz plz plz telll me
ghulam says
and hair losss
Leed76 says
hi, i have found it very helpful reading these comments on people experiences in helping me deal with how i believe accutane still effects my life. I was prescribed accutane a number of years ago as i had very bad acne and I had a lot of the problems peoples have described here. I am now going to celebrate my 40th birthday this March so it was a while ago. I was prescribed accutane twice the first time i was on it for several months and it nearly ruined my relationship but I had a understanding girlfriend and i am glad to say we have been married for nearly 6 years. The second time i was prescribed accutane I stopped taking it after two weeks. I have been diagnosed with bowel disease, suffer depression, impotence and have been unable conceive children, losing my hair and ruined my relationship with my brother and sister. The worst thing is that my acne was a side effect of another condition i have. It appears that the dermatologist was treating the symptoms and not the cause of my acne. Please note my next comment do not apply to everyone and so should not be taken literally as these are my experiences from my journey. I stopped taking accutane after two weeks of my second dose as I was diagnosed with acromegaly which is a hormonal condition after i had a operation to help resolve my acromegaly my acne cleared up overnight. I now live an acne free life but have to live with, in my opinion the side effects of accutane of which i should never have been prescribed in the first place. I have a beautiful loving wife and continue to try to build my relationships with both my brother and sister, My acromegaly is an on going problem but i am one of the lucky ones even with the problems i continue to live with.
Dr. David Healy says
———- Forwarded message ———-
From: Dubya B
Date: 29 January 2016 at 20:12
Subject: Sad News Regarding David Chow of the Roaccutane Action Group
To:
David Chow, administrator of RAG-forum and chairman of the U.K. Roaccutane Action Group, committed suicide last month after 21 long years of suffering severe depression and painful physical complications brought about by Accutane.
Coroner asks for review of acne drug Roaccutane after photographer’s suicide
[http://www.eadt.co.uk/news/coroner_asks_for_review_of_acne_drug_roaccutane_after_photographer_s_suicide_1_4337597]
I never knew him personally, but Mr. Chow contributed a great deal to those of us left with long-term side effects from Accutane.
He will be missed.
mary says
Came on to this section due to a story in today’s paper. Very sad to read the forwarded message.
In today’s Daily Post (UK – North Wales) there’s a full page report about a young girl who was on Roaccutane. Her dose was repeatedly increased to 70mg which caused her to lose 92% of her pancreas.
On her discharge sheet, a consultant from The Royal Liverpool University Hospital states that necrotising pancreatitis was ” likely to be secondary to Roaccutane” and stipulates that the medication was stopped.
What did Roche have to say about this case? – the usual “in the case of Roaccutane, the regulators agree that its clinical benefits outweigh the risks”. Hard to believe that when I see how many comments have been received here and the severity of their cases.
Elizabeth Barron says
Yes! I’m 31. I’ve also suffered from acutane. Ruined my sex life. I have to use plenty lub. It’s been also 6months sense I’ve taking it. Hopefully it subsides. This is the worst ever. Acne gone but sex life gone. I pray my life comes back together again.
anon says
I have been taking accutane for 4 months, Ive started to noticed I haven’t been as wet as I usually am and am worried that it could be permanent damage after reading all this, I’m on 30mg a day, should I just stop taking it all at once or gradually go off?
Dr. David Healy says
difficult to know – there may be something of a withdrawal syndrome – frying pans and fire DH
David S. Bryer says
Roaccutane complately killed my sex life over 8 years ago. Stay away from it!
Best regards,
David
Scott says
I took Accutane 22 years ago. My first attempt at intercourse was 3 weeks into it, and it was a failure that left me without confidence which I have never recovered from. I have suffered greatly mentally, with no confidence in my sexual ability. That being said, here are some things that give me hope:
1) I have had successful sex in the past without ED meds. If I take Viagra, and continue to have sex daily, I can go for several days without the need for another pill.
2) I have always responded to masturbation and porn. (I try to avoid both now as I suspect they might be the source of my issues) This makes me suspect that my issues may stem from a sort of masturbation addiction/conditioning.
3) I have a close family member who took it with no issues.
Trying to be positive, I have a possible theory: It may be that I overindulged in masturbation as a teen, and people who do that may be prone to have acne. This would explain a correlation between Accutane use and libido/ED problems.
On the negative side: If Accutane damaged something in me, what could it possibly be?
Also, being almost 40 years old, I have no idea what to expect as far as functioning is concerned.
Vivian says
“…overindulged in masturbation as a teen, and people who do that may be prone to have acne. This would explain a correlation between Accutane use and libido/ED problems.”
Except this theory doesn’t at all explain the multitude of cases where people’s libido and sexual functioning were perfectly fine up until they started taking Isotretinoin.
Joshua Shaffer says
I’m a 19 year old male (17-18 when I took the drug) who took a six month course of accutane from late November 2014 to late May 2015. I noticed while on the treatment that I was not as horny as I had been. I would see girls that I had previously found super attractive and noticed I was not having as strong of a mental response to seeing them. I brushed it off, thinking I was just going through a phase, I didn’t think it could have had anything to do with accutane, in fact I did not even know at the time that any drugs could affect libido. I thought my sex drive was an unbreakable constant in my life and that losing it was something that only happened to old guys with low t. Today’s date is March 18, 2016, and my sex drive has not come back at all. I have almost zero sexual interest, I want to want to have sex, if that makes any sense. If I see a girl or an image of a girl that would have in the past mentally aroused me, I feel absolutely nothing. I might as well be looking at a rock or a tree. With the libido and arousal problems I also have pretty bad erectile dysfunction. I am able to have sex, however I fail to get an erection/maintain it about half the time and have an extremely hard time getting aroused in the first place. Luckily orgasms are still pleasurable to a decent degree for me. I can masturbate, however I also suffer from the same difficulties with this as with sex. All of my hormones were fine when I had them checked (prolactin, thyroid, testostorone was 768 ng/dL), and there’s nothing physically wrong with my penis or testicles. Recently I was approached by a kid on my floor at college who tells me he has the exact same problems. He took accutane longer than me and at a higher dose, and his problems are more severe. He takes cialis to be able to have sex with his girlfriend, he can’t otherwise and even that doesn’t help most of the time. He has no libido and says its almost impossible for him to masturbate to completion. I never had sex before taking this drug, if you are reading this and are considering taking this drug, I would highly suggest that you reconsider because it may be the worst decision you have ever made in your life. My dysfunction is the first thing on my mind when I wake up and the last on my mind when I go to sleep. Acne isn’t fun (tbh mine was not even that bad yet my derm still gave tane to me like candy and told me it was safe), but sexual dysfunction is absolute hell. Acne won’t keep you from finding love or getting laid, and usually the person who’s hardest on you about it is yourself. Other people never cared about my acne and girls even told me it wasn’t that bad and that I shouldn’t care about it. I didn’t listen, I was self-conscious and obsessed with my acne, and in a perfectly vulnerable situation to take drastic measures that could and did harm me. My advice, stop caring about your skin and learn to love yourself for who you are. Taking this drug was absolutely the worst decision I have ever made, and I’ve become resigned to the fact that I will probably be in this hell for the rest of my life.
DoctorK says
I am a physician and took isotretinion for about two months, about two years ago. I had loss of libidos and impotence about five weeks after starting it. This is an unreported side effect that even the dermatologists don’t know about. My advice to anyone thinking about taking the drug is don’t risk it. I have been digging deep into research papers to figure out what the if anything can help it. It seems that this drug reduces the ability of the body to convert testosterone into dihydrotestosterone (DHT). DHT is the hormone that is deficient in men and women and needs to be replaced to get back your libido and improve depression. While taking testosterone will help, taking androgenic steroids such as mesterolone (which is analog o DHT) will make you feel almost back up your old self. Ideally, taking 200 mg of testosterone and 100 mg of Mesterolone (commonly known as Masteron) subcutaneously will help significantly. Women have to be more careful about the dose as they will have irreversible masculinization if the dose is too high. I would say 20 mg of testosterone and 10-20 mg of Masteron per week is a typical dose for women. In Europe DHT cream is available with a prescription and should greatly improve symptoms but it’s not available in the US so you’ll have to find less legal ways to obtain it online.
Zak says
I have taken roaccutaine about 8 years ago for acne ever since I have been on and of depressed and have no sex drive and find it very difficult to get erections . What can I do to fix my future ? Please help
Jeff Scott says
Hi Dr. K,
I too took accutane about ten years ago now and am suffering the long-term side effects. I have some sexual issues, but my main complaint has to do with cognitive and physical deficits. Did you experience any decline in cognition while on or after this medication?
I am a medical student, and too have been reading research papers and such trying to figure out what is going on with me. I was thinking about trying testosterone with a focus on increasing DHT. Many of my physical symptoms are signs of low DHT – super dry, sensitive skin, lack of facial hair, young appearance, etc. – which makes sense since I took this drug when I was 18.
About the protocol you suggest: I saw a paper that shows isotretinoin decreases the number of androgen receptors. Are you suggesting exogenous testosterone to upregulate these receptors, and mesterolone to increase DHT which has a strong affinity for these ARs?
I am interested in how this worked out for you, as well as if you think it will help me. If you want to, email me so we can discuss further.
jeffscott357@gmail.com
Best,
Jeff Scott
Zheni says
Thank you, doctor K.
I think your response is one of the first comprehensive solution suggestions I have seen. For female patients in Europe, the protocol obligatorily includes contraceptives such as ‘the pill’, which additionally lower testosterone.
I wonder if a lower dose (0.25 mg/kg) of isotretinoin for a longer period, which would involve a longer secondary reduction of testosterone by the hormonal contraceptives,would not increase the likeliness of permanent loss of sexual drive?
Your answer speaks to the contrary of permanent damage. You also do not advice on dosing (on lower dosing either). I just saw the irony of possibly taking lower doses to reduce side effect, with the unavoidable negative correlation with testosterone and ‘the pill’.
Best, Zheni
loupgarou says
I took accutane just before turning 17. I took it for two or three months. It did wonders to stop my acne. I know many people complain about sexual side effects. This is probably due to a lowering of sex hormones. But I was wondering if it also stopped my penis and testicle growth. See if it lowers testosterone levels, IGF 1 levels and reduces DHT during the end of puberty this must not be good for testicle and penis growth. Also I want to know if it reduced my adult height. I did some research and when I was 13 yrs 8 months old (June 1989) I was around 5foot two. A normal growth would indicate that I should have been around 5foot nine. I only grew to five foot seven. Also is there any cure now; and is there a way to sue the drug manufacturer?
Richard says
I was prescribed Accutane back in ’82. I had serious acne so my doc gave me this wonder drug that just came out on the market. I was not quite 18yrs old and of course agreed to try it. At that point i wouldve tried anything to get rid ofmy acne. Shortly after taking accutane my face cleared up, my docs office was full of other docs wanting to see how amazing the guinea pigs face cleared up! Lol
Within a few months i was losing hair, was almost completely impotent, had virtually no feeling in my genitals and began to withdraw from friends, family and girls especially…..due to embarassement of not being able to get it up! Of course i became depressed, was labelled with schizophrenia……and to top it off my family has a history of Anxiety……i didnt have a fighting chance.
Thankfully i met an understanding Woman in my early 20’s and things slowly improved sexually. I am 52 now and with the help of viagara of course …i am able to enjoy sex, which was always hit and miss. Oh i forgot to mention i have had bouts with a swollen prostate which has given me problems since taking the wonder drug! Im so used to the side effects now…theyre just a part of life! This drug shouldve been outlawed 30yrs ago…..all i can say is Do Not Allow your loved ones to take this drug! The cure is way worse than the acne for sure!
Maria says
I am so shocked!!!!!! This explains why I never wanted to have sex or when I did I could never orgasm! Oh my God! I took it for several months when I was a teenager, now I am 47. All my life I was looking for the reason why I was feeling like this and I thought I have psychological problems….and I was raving about this drug how it cleaned up my acne!!!!!! The dermatologist was ready to give it to my son and only due to his final year exams he did not take it yet but would take it next month! Thank you God for bringing this in front of my eyes at the right time. Pray for all of us suffering those life long side effects….
Cat says
I too have had a significant reduction in desire, stimulation and ability to orgasm, as well as intense pain during penetration sInce taking 2 rounds of accutane 2 years ago. It is ruining my relationships and confidence completely. I am FURIOUS at the company for their leaving out of this information. I am going t try everything to fix it. I want a good sex life and kids in the future. No drug should rob me of that possibility. Who’s up for a class action?
Giusi says
I unfortunately took my teen son to a dermatologist for his acne when he was 14, over 10 years ago. She NEVER EVER me anything about all of these horrible side effects and that this drug is a chemotherapy drug, noone in their right mind would want to give this crap to their children, and especially not for something like acne. So unfortunately I trusted her and my son was on this crap for a few months, and after that developed depression, and was suicidal and aggressive. I never figured out why he had changed so dramatically, while he had never been aggressive in his life, and now he is still the same way and won’t even contact me or his father anymore. I hate that doctor and if I could find her she wouldn’t be around anymore. Furthermore, once he mentioned with me (he is always been shy so this was the only hint I have about his sex life) that his penis was too small. This surprised me at the time (he was 18( especially because genetically it should not be that way (his father had no problems with size). Now, unfortunately too late, I am reading about this. I have no clue about my son’s sex life but he never talks about it or brags about anything, so I believe he might have some problems. I hate that doctor and wish I could find her and give her a lesson she would not forget for the rest of her life!
Julio says
Thank GOD I’m in no need of this medication but my wife is and she has been rejecting me since she started taking Myorisan (isotretinoin capsules, USP 20mg she does not want to be around me of course not even have sex I’m a man that is only dedicated to the family I don’t go out with friends my family wife and 3 daughters are my life I don’t drink smoke or do drugs I’m a very hard worker and I help a lot around the house and now she has asked me for a divorce I do not know what is happening I have not given her any motives she’s been on this medication for about 2 months and now they started giving her Claravis 40 mg I’ve tried showing her the side effects I saw on the box medicine she’s out of town now and I just saw all this comments on this web should I call her dermatologist and tell her all the symptoms she’s having cause she is also depressed feels worthless and many more things…
ARC says
Honestly I was already incredibly depressed before taking this medicine, but now, I feel numb, and add to that, impotent. I used to have hopes and dreams and feelings for people, but now, I am a shell who doctors claim “its all in your mind” and dismiss the ways I have been feeling. I am very close to ending this because I will not go through decades more of misery like the last few months
Arc says
I was already incredibly depressed before this medicine, however then, I had the hope that things would get better. Now that has all been dashed thanks to the crooks at Teca who make Claravis, and I hope to kill myself in the not too distant future
John Doe says
Arc,
Please don’t do that. It may be a long dark tunnel, but there is a light at the end. You can get there!
Yours Truly,
a John Doe that cares.
ARC says
Are you sure? because as far as I’m concerned, I just permanently ruined my life and virtually everyone on here who took this poison at one time or another has never recovered no matter what they do. I was already depressed enough before the medicine. Now I can’t even feel any emotions or anything anymore (let alone feel horny), and as far as I’m aware, I’m already a shell. I’m VERY tempted to put an end to this inescapable nightmare especially considering that every doctor I’ve visited just denies there’s a problem like they’re some crook paid off by Hoffman LaRouche.
ARC says
So do we just die alone and enter the void like this, or is anyone going to actually help. Have I really entered a tunnel from which other individuals HAVE made it all the way through, or am I stuck in a pit watching my existence slowly crumble? I am tempted to find a way to end it all, unless anyone can provide a GRAIN of HOPE to put an end to my crippling anhedonia of all kinds (sexual, emotional,etc). I have already been killed so now shall I cease to exist?
ARC says
Taking accutane often makes me realize I had easier access to a quick painless means of ending it all. Anyone who even SUGGESTS that I will permanently live like this without getting one hell of a payback (and more than money for sure) is full of crap. Honestly I would love to take down the makers of Accutane by all means possible and make them suffer (Heavily) for their crimes.
ARC says
We need to find a way to make the drug companies pay in terms that will actually keep them from screwing people over like this. Simply suing them is not enough.
Elizabeth says
i totally understand how you feel it’s very much so depressing but please don’t end your life over this. I know it’s hard because I’ve been going through this a whole year now and still looking for answers. Just pray about it. Everything will be fine. We gotta stay strong for one another. It is away we just haven’t found it yet and i pray that we all get justice. This is very sad situation.
Gardener says
Hi all. My son took Roaccutane about a year ago. He now tells me that he’s gender dysphoric. As far as I know, he never had a problem in his entire life, and now this, out of the blue. He is reclusive, never dates, and now he wants to be a girl. If anyone can help please contact me on pycraftm@worldonline.co.za. Go well.
ER says
I appreciate that Accutane can have serious side effects, but gender dysphoria is not one of them. He has had a problem, it’s just that he’s only just decided to confide in you about it.
Petra says
I went on Accutane at the age of 21 and it gave me perfect skin for 20 years. Now, 20 years later I am in incredible health and not only that but look 10 years younger than my age. After taking Accutane I did not have a pimple for 20 years. I can’t believe some of these people on here blaming anything and everything on Accutane it’s ridiculous. It’s a great drug that changes many people’s lives for the better as they face the world with perfect clear skin and get their confidence back
Elizabeth says
Yes! it cleared my skin but it also ruined my sex life. I can’t believe you would think people would take up their great time to just post something that’s not true is baffling. Of course everyone has a different side effects! If nothing at all. You was just one of the lucky ones. Thank God for that instead of judging us. Our lives are damaged enough.
Hardik says
i am also taking this medicines from last 2 year as a acne treatment, but now i am also feeling that i have a problem of Erectile dysfunction. so now plz help me and guide me that what i have to do ????
plzzzz help somebody from your experience.
Heather says
RoAccutane killed our beautiful son. Not on its own. But it did all the stuff to him that so many brave sufferers have written on this site. And because he felt so low, he was given the SSRI Seroxat, to alleviate his mood. And the combination of the two meds drove his anxiety through the roof. And he was considered to be temporarily psychotic. He asked to go into hospital cos he couldn’t stop the suicidal thoughts going round and round in his head, he felt he might kill himself. He was 21, at Uni, set for a First Class degree. But the anxiety and the strange fear never left him. He never went back to Uni. He had akathisia from all the meds. No one would listen, no doctor would take on board that his suicidal thoughts were not caused by his (now much improved) acne. He lived another 11 years of hell, never realising that his mental hell was due to the meds, not to him. He created a successful IT business, but in the end, a combination of derogatory remarks about his prowess by a stupid older woman, and callous bullying by a psychiatrist, caused him to leave this world. RoAccutane/isotretinoun began his torture. He wanted us to go on and find a solution. We must all do this. We cannot allow Roche to continue to get away with the fact that they marketed a drug which was for chemotherapy, changed DNA, ruined lives, killed many youngsters, and even the MHRA do not seem to want to understand this. Don’t give up a life for these people, fight for answers, and warn everyone. This drug maybe be seen as a quick fix, but can lead to a living hell. We need investment to find safe, effective and affordable acne treatments, like Blue Light therapy, laser therapy if needed, diet research. Remember, someone in Big Pharma is making big bucks from this RoAccutane/isotrwtinoin and they don’t give a fig what it’s doing to you.
Amanda says
Has anyone here experienced a low or zero sperm count after using Accutane?
Kim says
I am 43, female, and took Acutane when I was 18 for about 6 months. I often wonder why I absolutely cannot have an orgasm and I am very sispicious that it is because of my Acutane treatment. Really, I have tried and tried with different partners with no success. It really sucks to not even know what these awesome things called orgasms are! The very reason for having different partners is because I can’t keep a man around. I even became a single mother and it is not confirmed that that is why but I am almost positive it has a lot to do with why he even left me. Feels so sad. Honestly, I think that the partners I had started out positive and patient but eventually couldn’t understand my orgasm troubles, especially those who have had previous partners with “really big, intense orgasms.” I have tried counseling, reading advice in books and on the internet on how to achieve orgasms, talking to different GYNs and medical doctors, but I think my body is not able.
I believe Acutane may have caused my ongoing, never-ending depression as well. However, as ironic as this may sound, I wouldn’t take my wonder-drug treatment by Acutane back. I actually wasn’t even able to get a boyfriend before Accutane because of my gross acne but quickly had men flocking around me post-treatment….the reason I don’t even know if I had a normal libido before treatment or not really (no boyfriend=no sex). Also, I do remember being sad as a kid so not sure if Accutane caused my depression to worsen or stick around longer, just not sure of it had anything to do with my depression or not. Who knows, could I have developed depression because of all the social rejection and teasing I experienced as a kid and therefore my lack of confidence because of my acne? That is likely.
The fact is, I want to experience what “all girls experience” according to what my current partner told me. (He says he has asked many men he works with if their wives have this issue and also many girls he knows, and none that he has asked have even heard of this problem in girls, and think this problem is “wierd” for lack of a better word. It’s the same response I have gotten from every sexual partner I have had…only about 10 in total. They have all thought it was wierd and perplexing as I do too).
I do get horny and I enjoy sex, but I have to use lube almost every single time and I have never had an orgasm and IT SUCKS!!! And after reading many of these posts, I guess I am not alone so good. Phew. Lol
Whether Accutane caused my depression and/or orgasm trouble is all a big mystery, but something I question often. I do agree that it should be listed as a possible side effect.
Heather says
Totally agree with Kim, but they will never admit this by putting ‘possible permanent sexual dysfunction’ on the PIL as a side effect, cos if they did no one with any sense would ever touch this stuff. You can always change your skin for the better – it may take a while, and even if there is scarring, laser therapy is fantastic, once the eruptions stop. Blue Light treatment is wonderful. Diet works. I know, my son had one of the worst cases of modular acne you can imagine, on his back, and chest. Dr Tony Chu, acne specialist in London achieved amazing results within a few months, which years of RoAccutane (Accutane) use prior to that, never did.
But he died by prescripticide nevertheless, because of the mental and physical damage the drug had done to him. He had gained the good skin he longed for, paid for it himself, was delighted with it, but it meant nothing in the end, because RoAccutane-isotretinoin had ruined the rest of him. He was 32 when he died, started the drug when 21. He was a private sort of guy, didn’t discuss sexual dysfunction with us, his parents, but from something we discovered after his death, a text message sent around by an unpleasant woman he’d recently had some unsought contact with, it may well be that shame about this was a factor that drove him finally out of this world along with appallingly bullying treatment from a bigoted psychiatrist who would not listen.
If interested you can read his story on RxISK/Blog as ‘RoAccutane – The Perfect Circle’ and ‘Roche and the Perfect Circle’. See also http://www.ollysfriendshipfoundation.org.uk, and it’s own Facebook page. We and other parents confronted the Directors of Roche in their own Boardroom about all these issues on 24.4.14 after a Protest staged outside their premises – it got us nowhere, including sexual dysfunction. One guy, still alive, explained it to them, face to face. Neither did going to Government who commissioned a further Report about the drug by the MHRA published in Nov 2014, which was, we all felt, another complete whitewash. Ironically, our son became so akathisic on various SSRIs, prescribed to counter the low mood from the acne drug he’d suffered for 11 years, that they eventually gave him some Olanzapine, an anti psychotic that can actually cause acne itself. It did. So he’d gone full circle, spent hundreds of pounds getting rid of it successfully with Dr Chu’s excellent non drug treatment, and then saw it creeping back again.
I guess this is all good for business for Roche and their multi-billion profits from Accutane/RoAccutane-isotretinoin. The Perfect Circle just goes round and found, and as some folk drop out, there will always be new victims ready for kidnap, naturally wanting good skin again and believing what dermatologists tell them. Don’t throw away your life for this stuff if it’s damaged you, band together and mount more Protests. Never give up. But be aware, we are taking on a very powerful foe, well funded, and determined not to admit to the damage their drug has caused. Keep on posting your accounts, raising awareness, pass the word to friends, take RxISK reports to your doctors, believe in the rightness of your cause, and above all, believe in and be true to yourselves. None of this is your fault.
Daniel says
I posted my experience with roaccutane two years ago with the same side effects of the male sex drive being low and struggle to get an erection . Only being on it for 3 months went of it straight away a luckily I’m back to my normal self , although still have few acne but my body feels the same , my erection is normal, my sex life is good. Since then I never looked back. If you see side effects in the early stages get of it straight away it’s not worth having clear skin and endure this torture,
Jonhdo says
Ok guys for all the people who doesn’t believe Accutane can cause Ed just look here
I thought you might be interested in this Health Canada information. See
http://www.hc-sc.gc.ca/dhp-mps/medeff/reviews-examens/retinoid-eng.php.
Jonhdo says
Just see
http://www.hc-sc.gc.ca/dhp-mps/medeff/reviews-examens/retinoid-fra.php#share
josh says
Accutane absolutely can cause extreme sexual dysfunction. I took Accutane as 14 year old boy, I am now 24 years old and can say my libido still practically non-existent. Nobody seems to have an answer to this. This is a life ruining side effect, which on its own should force the withdrawal of Accutane from being sold. This drug is far too toxic and powerful to be warrant use for a minor ailment such as acne.
This side effect can be permanent, I have no idea how to fix it or where to begin looking for solutions.
I warn you, boycott this drug, do not risk taking it. Its not worth it!
Lies says
Hey Josh,
I am a 24 year old woman but I am pretty much in the same situation as you are after taking Accutane when I was 16 (extremely low libido) . I was wondering how you cope with it in relationships. Do you have no-sex relationships or no relationship at all or…? I am sorry if I am being really pushy and I understand if you don’t want to talk about it. I just genuinely don’t know how to handle this in my life and wonder how other people deal with it. You can always let me know on lies10_1994 if you prefer not to discuss it on the forum.
David says
Hi,
I am currently taking Accutane and I am experiencing these sexual problems too. My morning erections are completely gone, I’m not able to get an erection from my thoughts but I can if I touch my penis. As well as this, my sperm has gone really watery and my testicles have gone smaller. I feel like this could affect my fertility long-term which is scaring me as I’m only 20 (soon-to-be 21).
It’s literally the only big side effect that I have currently. At first I had itching but that’s eased off and I also have ringing in my left ear but I don’t know for sure if that’s to do with the tablets or not because I had ear issues prior to this. Also, I am struggling to poo a lot compared to what I previously was like.
It’s a real worry and I’m considering quitting the drugs after a month of doing 40mg a day. My fear is my acne will return viciously because despite these issues my acne has improved a lot.
Andrew D says
I’ve been on Accutane multiple (3) times since being a teen. I am a fit individual with above average strength and cardiovascular system. I’ve also suffered minor depression, suicidal thoughts, loss of libido, small ejaculatory volume, and very poor erection quality. I am turning 25 this year and continue to experiment with herbal supplements with no luck. Pornography addiction is something that can also very much effect erection quality and even though not enough to cute the matter i advise against watching it as it is definitely not beneficial for your brain.
flynn says
Have you gotten any better yet?
Andrew D says
Still having issues. However I will comment once I find something that works for me here. Always experimenting and will report any positive findings when possible.
Currently #1 not looking at pornography daily and not video gaming (anything that causes an addictive cycle of unnaturally high levels/repetitive serotonin spiking) has given myself peace of mind as I am less moody and more consistently happy with “the little things”.
Downstairs however – I am still suffering as per above. I am currently doing kegel exercises every other day using an app called “Prostate Aerobics” while i drive around in my car.
Supplement wise I will be looking into other various products to see what might help me get my libido and solid erections back.
Warm regards,
John B says
Hello, Andrew
A friend of mine took the medicine 7 years ago and feels like the sexual problems progressing.
I have done some research regarding DHT, Testosterone and Androgen Receptors, but nothing conclusive.
He will test his DHT levels soon and my guess is that DHT hormone supplementation should help.
Which kind of supplements did you test?
In case you want to talk more directly, I have Telegram.
Ch says
I took this over a year ago, and every day, I wish I had killed myself the previous day. I just need some way to bring myself to it. I have only gotten worse and will never get better since this murder of my sentience permeates all the way to my genes according to this article. I need to die as I am permaneantly ruined.
maxymoon says
Did anyone take accutane during puberty or before puberty if so did your penis grow while taking it and after you stopped taking it? please I need answers.
Erik Hermanson says
Hello, personally I took Accutane starting in the fall of 2015 and have experienced many of the side effects that are listed on this forum I am nearly impotent but can still manage a healthy erection every so often if I had diligent about taking fish oil pills which I have found improves things about 20% back to my old libido and erectile functionality. Personally I used to be horny all of the time, I was very good at practicing nofap but now I am like a 70 year old man as far as my libido goes. I have not give up all hope when it comes to this but personally these side effects have led me to be nearly suicidal. I was institutionalized for trying to kill myself with my father’s gun but have been out of the hospital for around 6 months at this point. I plain and simply have little to live for because of this drug. Back before Accutane I would have felt very angry towards the manufacturers of the drug but I have lost my ability to pretty much feel anything. Some would describe it as anhedonia but personally I would describe it as emotional blunting. At this point I would try pretty much anything to find a cure for these symptoms. Does any one have any sort of solutions for this? Personally I have tried all sorts of supplementation and am considering doing a water fast to cleanse my system. please feel free to email me at erikhermanson09@gmail.com.
ARC says
If there is a god, I’m killing it when I die after going through this shit.
Stefan Lay says
Hi.
Some of you may know of the large thread on Acne.org, which I started in 2011.
I am no better, like at all.
I have tried really, really hard to tackle this from all angles.
Nothing seems to make any noticeable difference.
Most days, I feel either depression and anxiety or nothing at all.
It’s been over 11 years since I came off Accutane.
This drug is a living hell.
None of us deserve this, so I’m sorry to anybody else who has been affected.
Stefan Lay says
If anyone is interested in meeting up with me (I live in Norwich, England), let me know.
I’m thinking about making a documentary about what happened to us.
I know it’s scary to consider putting your face out there.
But none of us should be ashamed of what we live with now.
We didn’t choose this.
Those who put us in this position should be called out for what they are.
sam says
Stefan, have you ever reported your side effects.
If people are not reporting can you please discuss the reason for this.
Stefan Lay says
I should probably leave my email address for anyone interested:
stefan_lay@hotmail.co.uk
Rbeca says
i take these medecine not accutane but isotretinoin. im so worried now. my erection much low . and my desires low . what should i do now plz plz plz plz plz telll me
athletes says
Im a person who took roaccuatane and I never linked severe abdominable pain to this drug. I was young naive and took it because of my skin doctor said so. I didn’t have anything happen while i was on the drug and i made sure my dry skin was covered so a not to get cancer. I started to get massive painful cramps in my stomach when i was in my late 20’s which lasted into my late 30’s and are now thankfully gone. I also got a racing heart condition which to this day is undiagnosed. My stomach pains were undiagnosed and i was also referred to a pysychiatrist as well. My family have thought i was mad most of my life since this drug also. I also get random sexual disfunction not always just sometimes which is annoying. I have also always been passed over for promotion in my job all the time since roaccuatane.
ML says
I apologize if this was covered somewhere in the comments already, but I am wondering if topical Retin-A cream has been found to have the same sexual side effects as Accutane.
Heather R says
ML I talked with a research scientist about this 2 years ago and she felt that topical use of Retin-A cream was safe. It’s when you take this Accutane- isotretinoin internally that problems can start. I think you still have to be careful about sunbathing etc and your skin can go red and dry, but I don’t think it affects your mind and sexual feelings.
TARA FARVE says
Accutane has ruined my sex life my husband is getting completely frustrated. no desire at all.
Lucy says
DO not take accutane. This pill caused me to have dry eye syndrome. I have suffered with t his for over 30 years. It was better if I had acne scars. Fortunately, I started the drug at the age of 20 so that I was already sexually mature. It probably messes with testosterone in men that are not developed yet. I also thing handing out antibiotics is worse than actually just having acne and scarring.
Heather R says
You do not have to live with scarring from acne. Dr Tony Chu in London performs amazingly effective laser scar removal and Blue light treatment. My son had very bad scarring but this procedure radically improved his skin, to a point where the scarring was almost imperceptible. Dr Chu works in NHS hospitals, or in his private clinic. He is a most empathic and understanding person who has expressed concern about the Russian roulette aspect of taking RoAccutane isotretinoin and he rarely prescribes it. He is well aware of the dangers it poses.
Sadly, although our son’s skin was greatly improved and he was delighted with the result, his poor brain was so damaged by several previous courses of RoAccutane over 11 years, that it became impossible for him to cope well with severe stress, mostly heaped on him by a woman much older than he who wanted him to marry her but had narcissistic personality disorder and was frankly impossible to please or live in peace with. She had ruined several mens’ lives before she pounced on him. He was unable to see her for what she was, till too late. He was prescribed SSRIs to help him cope, then told by a stupid psychiatrist to stop Venlafaxine at once, (having been on Citalopram too for many months prior to that), so he was given Olanzapine (antipsychotic) to stop his raging anxiety, which we now realise was actually chemically induced AKATHISIA. The acne returned, being a side effect of Olanzapine and started to undo all the good the laser work he’d paid for had done. He had bursting pains in his head, which were triggered by yet another course of RoAccutane we believe.
The physical and mental pain he endured was terrible. The worst pain was the bullying by the stupid psychiatrist, working in the NHS but who was also a head trainer in NLP who used his techniques to bully and terrify. Our son saw us, his parents, trying frantically to get doctors to understand his genuine pain, to realise that he was not attention seeking when he talked of feeling suicidal. He lost hope, unbelieved by the medics he’d put his faith in. He wanted not to be a nuisance any more. He died.
On 4th March 2018 there is another Westminster Hall parliamentary debate about ‘the dangers of Accutane,’. The discussion goes on and on, round and round, month by month, year after year. Nothing changes. Lots of talking and sympathy for the bereaved families. But the deaths go on and are brushed off by Big Pharma. One a month on average.
Do NOT take this medication and do NOT believe anyone who tells you side effects are rare and any suicides happen because of the acne itself, not the drug, Why then do the deaths take place often months or even years after stopping the drug and when the acne has long since cleared? That drug can stay in the body indefinitely. Replicating more and more hidden damage. It is not a conventional depression that causes the deaths, it is organic brain damage as can be seen on Dr Doug Bremner’s scans, 21% of the prefrontal lobes compromised. But the MHRA disregard those scans, presumably because they don’t like the evidence contained therein. So the Government report into psychiatric side effects from this drug, published November 2014, was not looking seriously at ALL the evidence, just the stuff in front of the carefully selected team of RoAccutane fans that the MHRA was comfortable with. Needless to say, it was a very inconclusive report.
Thalidomide took over 50 years to be fully accepted as the terrible causer of untold misery. RoAccutane isotretinoin has been causing concern for 34 years. Who knows how long it will take to get it banned, and those damaged compensated….
Heather R says
Sorry, URGENT CORRECTION about the Debate ‘the dangers of Accutane’.
It is being held in Westminster Hall tomorrow, 7th March at 4pm, and those attending are meeting with Col Bob Stewart, DSO, MP, at Portcullis House at 3.15 pm.
Rogerio says
Estou acompanhando.
No Brasil esse remédio é bastante receitado, porém um discussão como essa nunca foi aprofundada em fóruns brasileiros.
Porém estou certo que muitos conterrâneos passam por esses problemas e não associam ao remédio.
infelizmente.
Abraço a todos.
Ruben says
If only i could time travel, its been 7 years now since i stopped the treatment and i have a massive shutdown on my sexual functions , i have attended several doctors but no one seems to know whats going on… at this point im expecting a miracle this drug should not be on the market anymore…
Jesse says
Hello everybody, don’t mean to interrupt your discussions here, but I’m here to say all of you are heroes to me.
I’m so glad I stumbled upon this page, and I have already made some steps that I think will heal me. I’ll continue to catalog all of these methods y’all are using to heal yourselves, and try to apply it to myself.
My issue and about me:
Hey, I’m a 17 year old boy who took accutane for 4 months, don’t remember the dose but it was maybe 20-40mg per day. Those 4 months were absolute hell. I was severely depressed, and I remember BARELY anything. I don’t even remember how my sexual health was, or anything.
I’m still in a bad place in life, not sure if it’s because of accutance or just me being sad about school and junk (Cause im failing and I Havent been getting out of the house)
Anyways, I’ve been off it for half a year, and I have ED issues. I am not as depressed as I was on acceptance, but I can say with confidence Im not the same. I can only get semi-erect when masturbating. Sometimes I can fully hard, but it’s spotty. But, I am very very optimistic as through reading testimonies of all of you people, I have it okayish. Still, I need to cure my lack of libido and ED.
Through info I have gathered on here,
I will try the following for the next week:
Cut Out Vitamin D supllementation
Cut Out Omega 3 fish oil supplementation – Said to lower libido to those who were on accutane.
Cut Out Vitamin A from my diet – I eat a whole sweet potato each morning, that might be messing me up.
Run a bunch.
Then if that does not work
Try Saint Johns Wart
Try methionine with b vitamins B12 b6 folate, biotin
Try and see how I do with actual sex
Try detoxifying my Liver (Maybe through Calcium D-Glucarate)
Back up plans
Try a small dose of alcohol and see how it affects me (Temporary cure or something I heard on here?)
Try Viagra during sex to boost hardness, maybe I’ll just have to be dependent on it.
Re-think life N junk.
Accutane oughta be illegal. Wish I could just do something about it to save others, ive warned others about it so i guess i DID….
And guys, search and search through this thread:
https://www.acne.org/messageboard/topic/295030-repairing-the-long-term-damage-from-accutane/
Theres a shitload of pages.
I’m in the ~300 area
John B says
Hello, Jesse
I’m reading all comments in this page and it seems you’re exploring a lot as well.
I don’t have the problem, but a friend that doesn’t speak English has it.
I would like to chat. Do you have Telegram?
Contact me in this group I just created: https://t.me/+jQyQ_n_RL5k2ZmQ5
IndigoRush says
Hi,
I started the Acne.org thread.
12 years on from taking the drug and things haven’t ever been so bad.
My main symptoms are the chronic fatigue, dry eyes, premature aging (grey hair/older appearance), constant constipation and other digestive issues, and – worst of all – no libido, with an almost constant numb anaesthesia (in my genitals).
Mentally, I am in pieces. I am an anxious wreck and often feel confused and blank.
I feel like killing myself every day, and keeping down a job is impossible.
I don’t feel like I can cope anymore.
Cedric says
Hello everybody,
I first apologize for my English which is not very good.
I did not find information on French sites, but I just found this site, where apparently people have the same problem as me. So maybe I could be given some information!
I am a 28 year old man. I took accutane for 7 months with 40 MG per day. The good thing is that I have no more buttons. But I had a significant loss of libido. And yet I stopped the drug for almost 2 years. And I am often very tired too. I have already done a lot of blood work, been seeing doctors, and no one could help me, or find my problem. I eat well, I play sports, I do not smoke, I do not drink.
So I am here to know if other people have the same problems, and if so, have you found solutions to find a normal libido? or be less tired?
A big thank you if anyone could guide me!
Cedric, Belgium.
Matthew says
So what can we all do? I’m a 33 year old male who was prescribed at ages 14, 17, and 20 for mild/moderate acne. My life has been hell since and is only getting worse every year. I’ve seen petitions over the years, but nothing that has gotten more than say 400 signatures before being closed. I also read about a possible supreme court hearing this year in New Jersey. Can we all form some kind of protest or class action lawsuit against Roche for not disclosing serious long term health issues?
Matthew says
After 3 courses in my teen years for mild/moderate acne I can tell you all that 13 years after my last treatment, things are not going to get better for us. Does anyone have legal knowledge as to what we can do to have a day in court against these crooks? We all need to be compensated to help cover the costs of the health problems you will endure later in life from this poison. Now at 33 I’m having problems with every organ in my body, the newest being ibd, severe GERD, throat problems, and a bulging vein in my neck that doctors cant seem to figure out. Not to mention muscle loss, extreme dry nose, skin, eyes, joints, plus allergies and sinus issues I never had. I have wrinkles and signs of greatly accelerated aging. I literally feel like I will be dead in less than 10 years with how fast I started having serious problems over the last 24 months.
Doctors do not listen, will call you a hypochondriac, and sadly, there is way more knowledge on here than from any doctor I’ve spoken to on the subject. I do not have a family history of any of these problems and information from the internet was not available during my courses like it is today. This is all from the lasting effects of this chemo drug. It’s not my intention to damper the progress you all have made on here, and the veteran users of this drug greatly appreciate all the work you are doing to try and find answers and possible solutions. But it’s time to hold those accountable who did not disclose the dangers of this drug to mainly kids who just wanted to have clear skin. Keep up the good work and if anyone knows what it would take to have our day in court, I will be the first in line.
Niomi says
I am in the same situation as many of you. I started taking Accutane when I was 16. Ironically, my acne wasn’t even too bad, but my derm prescribed it to me because I had tried a lot of different things before that hadn’t worked at all and my brother had had very severe acne before and he thought it was going the same way (a lot of scarring etc).
Before I took Accutane I often masturbated and got really excited when seeing sex scenes in movies or reading about it in books. I stopped doing that while I was on Accutane. But to be honest, I didn’t think too much about it at the time, since I didn’t have a boyfriend. I figured it was just some kind of a phase that would pass. Shortly after the end of my treatment, I got in my first relationship with a guy I really really liked but I soon noticed that I just felt totally numb down there. I really didn’t like oral sex or manual stimulation because I didn’t feel anything and felt guilty. It was really awkward and my boyfriend felt rejected and thought I didn’t love him enough, so the relationship ended pretty soon.
I thought it was maybe just the guy/relationship, but I’ve had 2 relationships with absolutely amazing guys afterwards and always ended it myself because I just hated myself all the time for not liking the sex, feeling abnormal and making them feel like they did something wrong.
I never orgasm or masturbate as I still have no libido at all today. I’m 24 now and really don’t know what to do. All my friends are in stable relationships but I feel like I can’t even go on a date with someone because it will lead nowhere since no guy wants to be in a no-sex relationship (and even if they would be OK with it I don’t want to feel guilty all the time). I’m really desperate. I talked to my dermatologist, gynecologist, and a sexologist about it but they laughed in my face and said Accutane cannot be the cause of this. They blamed my anticonceptie pill so I stopped taking it, but this didn’t change anything. They took some hormone tests and did a gynecological test but all my levels are normal, so they say it is in my head but I am absolutely certain it is not. I really feel like Accutane has ruined my life and I will die alone. Does anyone have tips for me on how to cope with this?
Dr. David Healy says
Four Comments from Devolution:
Hello everyone I would first like to introduce myself, I go by the forum name of Devolution to keep my identity private. I’m a 20 year old male and want to tell everyone here to stay strong, there will be a light at the end of the tunnel, PSSD, PFS, PAS all have very similar side effects, cure one and potentially cure/treat them all. The post finasteroid foundation and Rxisk are doing some amazing research and propeciahelp are now welcoming Accutane sufferers as its under new management. If anyone here is lost and doesn’t know where to go, please join us over at [https://www.pasforum] or https://www.propeciahelp.com under the tag isotretinoin (Accutane). I’m just your average joe, I’m nobody special and don’t have an answer, but I am hopeful and if anyone would like to chat, here is my email devolution.accutane@gmail.com
This is my story:
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
[X] Inability to Ejaculate / Orgasm
[ ] Reduced Sperm Count / Motility
Mental
[X] Emotional Blunting / Emotionally Flat
[X] Difficulty Focusing / Concentrating
[X] Confusion
[X] Memory Loss / Forgetfulness
[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] Severe Depression / Melancholy
[X] Suicidal Thoughts
Physical
[X] Penile Tissue Changes (narrowing, shrinkage, wrinkled)
[X] 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”
[X] Vision – Acuity Decrease / Blurriness
[X] Increased hair loss
[ ] Frequent urination
[ ] Lowered body temperature
[X] Other (please explain)
-Reduced Healing
-Skin Stretchiness
-Skin Fragility, softness
-Visual snow syndrome
-Skin numbing
-Sensory impairment
-Fat tissue lumpiness/broken down
-Thinner skin
Dr. David Healy says
Devolution Continued – 2
What I noticed during Accutane but didn’t make the connection to the drug.
-Muscle weakness (went to the gym and couldn’t lift 5KG with my left arm, I thought I was unfit as I’m usually a strong guy)
-Skin not healing (red marks and weren’t fading and scarring occurred, never scarred previously and skin healed very quickly)
-Blurred vision(One day had to go a few feet from my TV, couldn’t see it and also noticed I couldn’t recognise peoples faces while outside until very close, also had night vision issue’s)
-Eye floaters
-Increased Tinnitus (had very light ringing previously which I now suspect from previous SSRI use, but it was not noticeable unless I tried to hear it, on Accutane it gradually got louder)
-Ghosting vision
-Slight decrease in libido (women just didn’t interest me as much, didn’t feel the fire in my stomach, the excitement)
-Skin (odd feeling or sensitive to touch on chest, kind of sore)
-hair growth on upper cheek’s almost reaching eye (not sure if this was related to Accutane or not, hard to tell)
-Flaky scalp, hair not as thick (I had very good hair before that people commented on, no signs of hair loss and had to get it cut every week or two because it grew so fast)
-Peeling skin
-Memory issues
Dr. David Healy says
Continued
What I noticed during Accutane but didn’t make the connection to the drug.
-Muscle weakness (went to the gym and couldn’t lift 5KG with my left arm, I thought I was unfit as I’m usually a strong guy)
-Skin not healing (red marks and weren’t fading and scarring occurred, never scarred previously and skin healed very quickly)
-Blurred vision(One day had to go a few feet from my TV, couldn’t see it and also noticed I couldn’t recognise peoples faces while outside until very close, also had night vision issue’s)
-Eye floaters
-Increased Tinnitus (had very light ringing previously which I now suspect from previous SSRI use, but it was not noticeable unless I tried to hear it, on Accutane it gradually got louder)
-Ghosting vision
-Slight decrease in libido (women just didn’t interest me as much, didn’t feel the fire in my stomach, the excitement)
-Skin (odd feeling or sensitive to touch on chest, kind of sore)
-hair growth on upper cheek’s almost reaching eye (not sure if this was related to Accutane or not, hard to tell)
-Flaky scalp, hair not as thick (I had very good hair before that people commented on, no signs of hair loss and had to get it cut every week or two because it grew so fast)
-Peeling skin
-Memory issues
Bill says
Dr. Healy,
Thank you for relaying this information about post-Accutane and PSSD patients being welcomed to join propeciahelp.com.
We are very hopeful that uniting those among our patient groups having the core PFS symptom profile will lead to a rapid advancement in the understanding of this condition through scientific research and greatly increase our power to advocate for harsher (truthful) warnings on these drugs. We are all brothers/sisters in this fight.
I would also like to thank you and the RxISK team for the RxISK prize initiative. There was much discussion on the respective patient group forums regarding the RxISK prize and we all appreciate your contributing to our goal of finding some way out of this mess. It means a lot when someone in a position to help us extends their hand to provide us with such an opportunity.
Tom says
I am 20 years old from Germany and have had 2 isotretinoin therapies (high dose. 80 mg Daily for 6 months both times). The only problem I have is meibomian gland dysfunction and dry mouth and nose (kinda like Sjögren’s syndrome) which is worse in the morning after waking up.. no problems with depression or erectile dysfunction. I still get morning wood and have no problems getting hard and ejaculate. Libido is sky high. I get instant boners when my gf touches me down there so I don’t think I have any problems in this regard
Andrew D says
Hey there!
I’ve been experiencing the same issues you have as well. Has anyone found anything that has helped you out greatly / reverse these terrible effects?
So far, what has helped me cope/keep things tolerable at this point have been:
#1 Religion (Catholicism in my case + being part of a positive community) and focus on being grateful for what we still have and not on what we have lost
#2 Consistent workouts + cardio (walk) whenever possible (twice a week stair climbing machine for 30 minutes at a time has really helped with my mood as i never did cardio much before even while being “fit” – game changer mentally)
#3 Healthy diet – avoid sugars+alcohol as much as possible. Natural sugars from real fruits are fine but no refined stuff
I am still experimenting with natural supplements but nothing has worked too much. Looking into Tong Kat Ali and will be looking into He Shou Wu to see if anything helps me “down there” as male hehe :/
Wishing you all the best – stay strong and be grateful DAILY for what you DO have,
Andy
Andy D says
Still having major issues. Yawning and tired all the time even with good diet. I have a 6 pack and have an athletic build and doctors say it is all in my head and that accutane is not to blame? I do not believe this. I cannot maintain or achieve hard erections since taking accutane. I am miserable that i cannot just be normal and I regret taking accutane.
I have experimented with a multitude of supplements over the years and nothing has worked.
For energy the only thing that has somewhat worked is staying active (not sitting all the time I am sure helps…) and Vitamin b3 (niacin) which gives me subtly more energy and makes me yawn less and be more alert.
The only thing that has worked for erections has been “yohimbine” for me but it has annoying side effects (anxiety, shivers, etc.). For erections i am still experimenting to try to find what might work to help myself since doctors cannot.
I have faith in myself to hopefully find a solution to these persistent problems but do my best to live with them…it has been a struggle.
Andy D says
Just an update. Still have anhedonia since taking this poison. My girlfriend thank goodness is extremely understanding but is sad for me. I am sad too but either I cry about it or accept it and continue to be positive and look for solutions. The only thing that works for me is Cialis to get somewhat normal erections. Libido is there BUT physically I cannot perform. I get maybe 50% erection but is extremely difficult to sustain naturally. CIALIS has helped me but who knows how long that will last. I just want to be normal again. Anyways, stay strong and positive. Just know you are a good person and you do the best with what cards you are dealt with in life. No need to live in the past. It’s a shame that big pharma can do these things but…what are we to do apart from not giving up? We do the best we can and stay positive. Stay strong. Be positive. Make the most out of life. Count your blessings and not your shortcomings. Be the strong beacon of light in others lives. Cheers
Shezzy says
Update?
mike says
Took 1 pill of 20 mg. It was enough for me to develop ED. Just a single pill.
Asifrayan says
Accutane also known as isotretinoin made me pay a very heavy price for clearing my acne.I can no longer feel any sensations and i escape away from even the thought of sex because it will reveal my impotence clearly. For god sake stop using this medicine at once, its side effects are persistent like in my case and i don’t even have any urge left to cure myself. A guy in early twenties wishing for the 💀 death. I would be glad to offer my advice and further research to anyone who needs my help. My email address. Asifrayan253@gmail.com
sera says
I have been looking something to neutralize accutane Complications for 3 years.
but i haven’t found any thing.
i am 24 years old and i take accutane when i was 16.
my skin is so dry and i lost my beautiful hair just because of accutane.
pelease…
are there any one to tell me is there any way to neutralize accutane Complications?
my email is:
noosrinasrin5@gmail,com
PSL says
Hi everybody,
I am a 21 years old female that took Accutane with 16 years old. For years I did not find the reason why I had completely loss my libido. I even started going to a psycologhist. I would really appreciate if someone in the same situation as me or who has overcome it could contact me at psl97@outlook.es.
It is being hard.
Regards,
Paula
Ameen says
38Male
My Derma just prescribed me Accutane.
Popped a 40mg last night.
Wife made the research for me. She forced me to halt immediately.
Searched & found this website/forum.
Seems scary!
I will probably seek other ways. My condition is not severe & my stuff is valuable too.
Bill says
RxISK has recently submitted a petition to the FDA urging the agency to add the risk of sexual side-effects to the drug label. This was prompted by the discovery that 1/3 of all cases of sexual dysfunction reported to the FDA by teenagers was due to Accutane.
Please leave a comment:
https://www.regulations.gov/docket?D=FDA-2018-P-4088
This will give the post-Accutane community leverage to pursue future research into the underlying cause of sexual side effects, as well as other unintended effects.
Peter says
I have finished my course of accutane and have suffered a great reduction in libido and loss of pleasure. Is it safe for me to use a topical retinoid post treatment to keep acne away? Does it keep the accutane in your system for longer and inhibit the action of 5 alpha reductase? If anyone has any knowledge about this please let me know.
flynn says
Hello folks,
I have made a forum dedicated to post accutane syndrome. The effects of this drug are devastating but I feel could one day be treatable.
I have outlined what I believe to be the most prominent theory of PRSD, PAS in the following post. This theory also provides a strong link between post finasteride syndrome and post accutane syndrome. Please read it and provide any feedback that you deem appropriate.
[https://www.pasforum.info/threads/theory-pas-and-pfs-5-alpha-reductase-enzyme-very-plausible-currently-seems-to-be-the-most-likely-cause-of-pas.9/]
Marcelo says
suffered something like that. I took Roacutan for 57 days only! And after 13 days I started to have sexual problems. Libido 0, weak orgasms, no tenderness in the glans, tiredness, pain in the joints. Only 14 months later I recovered. I think because I took very little time. It was 40 mg per day. Today I feel normal again. But does it have no solution for those who do not spontaneously recover? Injectable testosterone, DHT (proviron), any aromatase inhibitor, or anything of the kind, will not help? How are the exams? At the time, my testosterone was normal, a little lower than before Accutane. One interesting thing is that I took proviron in the 13th month it looks like it accelerated the recovery.
Jennifer says
Hello everyone i was taking accutane for 5 month i stop taking the pills in December the 15 because i noticed i was losing a lot of hair and still losing a lot of hair, i told my derm if i will go bold anytime soon he said no that nobody has become bold after taking accutane that i will stop losing hair in 3 months,thats what he said ill see if that is true. He ask me if i still have isotretinoim at home i said yes and he told me to finish taking all the pills i have now, i have to go back in April but i wont take the pills i have left i just will tell him that i did take them because he will give me a cream for my face when i go back in April. I see a lot of comments about people having sexual complications well im a female virgin and im 21 and so i really dont know about penetration but while on my 6 months taking the pills i did masturbated a lot almost everyday i dont really like masturbating but i be so horny. yesterday i also masturbated my self i really haven’t seen any complication, also since monday today is thursday i been so wet all the time i have to wear a pad now im going to the gynecologist because i dont think is normal. Also i see a lot of comments about people having depression, i was depressed before taking isotretinoim and when i was taking it, is normal to me to be honest, i go to church and i talk to God and Jesus all the time and im fine. I know that accutane could make somebody take their life but i know that no pill was going to make me kill myself because is a sin and nothing is stronger than God, so i was depressed sometimes but eventually it went away. my advice for people taking isotretinoim, if you depress go to church read the Bible and talk to God and Jesus, they only can help you, no bitch ass psychologist or psychiatric will help you with your depression or the pills the prescribed you, just God can help you with your depression trust him and you see how you will wake up happy next day. I wanted to kill myself before taking the pills and God help me find my happiness out of nowhere. so the only thing i can tell you is that the thoughts in your head about killing yourself is the devil in your head telling you to take your own life, dont let him tell you what to do he’s a piece a shit, dont let him tell you what to do and pray to God.
May God bless you all.
kc says
Ugh. Feeling totally heartbroken. I am a 32 year old woman and I took accutane twice when I was younger for 3 months each time. Once at age 12/13 and again at age 16. When I was 24 I became incredibly aware of the pain in my body.. I felt like I was 90 years old, I can remember saying that. I knew something wasn’t quite right and somehow I ended up researching accutane, as I had heard that people had side effects from it. I found a very detailed and lengthly research paper online about the lasting effects of accutane.. it scared the hell out of me. I called my mother crying, and she was also concerned and sent it to a friend whose son had taken accutane. I worried that I had permanently damaged myself as my joints hurt way more than someone my age should expect, and my hair had completely changed, I had much less of it than I once had and it fell out at alarming amounts. From my research I found that people had benefited from taking Hyaluronic acid supplements which I began taking and have taken them ever since. I hope this helps others with joint pain as it’s natural and effective. I have not been able to find that paper on accutane online anymore. But I dont remember reading anything about sexual dysfunction in there.
Recently I decided to look up the effects again and the first thing I come across is the sexual dysfunction. I went through and read every single response on this article. I wept. It’s like reading about myself. I have never made the connection between accutane and my inability to orgasm and extremely low libido until now. I was not sexually active before I took it, I was so young, so I never had anything to compare it to afterwards. But I have always known something is not right and hoped that I could fix it.. though now in my 30s seems unlikely.. and now after reading all this I understand that Ive been robbed of experiencing one of the greatest physical pleasures of life. Heart breaking! My poor boyfriends that have always felt rejected and the source of most of the arguments in my relationships.
In middle school, I had probably the worst acne in the school. It was self confidence crushing, as you all know. I was picked on horribly as kids that age are cruel. I became very depressed and withdrawn. I could not make eye contact with a mirror. We tried all kinds of things, Pro Active, Retin A cream, nothing worked. Finally we went to see a dermatologist… Dr. Gabriel. She was incredibly uncaring and cold and I remember having a bad feeling about her. I remember her explaining to my mother about accutane “the benefits are way up here, the risks down here,” with her hands. She may have really believed that, but boy was she wrong. She did not seem to believe me that I was not sexually active, I remember. She also thought it seemed strange that I hadn’t started my period yet (age 12). She found it so strange she made me an appointment with a gynecologist to MAKE SURE I HAD A UTERUS. So at age 12, not knowing what I was going in for, I had a woman stick her fingers up my virgin vagina was which caused me so much pain I yelled and squirmed and she wasnt feeling my uterus so she put her fingers up my butt instead and declared “i think I felt it.” and was done. I felt completely violated and humiliated and I believe it was so unnecessary. I started my period at 13, I totally normal age. Through the years I have wondered about my low sex drive, thinking maybe something psychological. I have come back to that moment in my memory wondering if it traumatized my mind in a way that made me unable to fully enjoy sex. Now I know though.
Accutane got rid of my acne after those 3 months. I remember knowing I was taking something that was hurting my body, I remember the cracked lips that bled when I smiled, the pamphlets with pictures of severely deformed babies if I were to get pregnant. But it changed my life, getting rid of that acne. (MORE THAN I KNEW.) I went through a personal tragedy at age 16 and my acne started coming back with a vengeance. So I went on a second run with accutane, another 3 months. How tragic to think I destroyed my body and life in a way that would affect my intimate relationships for the rest of my days. If I could go back, I would take the acne. I will never know, as one person described on this thread, a “Skyrocketing orgasm.” What is that? That must be wonderful. I have always been hardly able to orgasm and when I can, it takes a ridiculous amount of work and it only feels like a 4 out of 10, often leaving my feel more frustrated than I was to begin with because I know (and i have always known) that it is supposed to be MORE. It is supposed to be different. Something isn’t right.
My heart goes out to all of you. Please keep informed if any progress is made. Like others have said, it could always be worse. But really… sexual dysfunction is not fun, and I think any of us would have turned down this drug had we known what we were about to give up.
John B says
I am collecting evidence and about to finish reading all comments in this page.
Created a group in Telegram in order to put everything together, along with theories of what may work.
I am no doctor, so I don`t need to get inprisioned by what I say like they do, but I do follow some doctors from US and Brazil.
I started this quest to help a friend that doesn`t speak EN.
People with exams done may be of more help, but I intend to help everybody when I find the answer.
In case you want to join the group, here’s the link:
https://t.me/+jQyQ_n_RL5k2ZmQ5
I limited the number of people that are able to join in order to avoid spam.
In case there’s need for another link/invite, reply to this message.
I`m using a Telegram group to avoid spam in my personal number.
Tomek says
I was taking oral isotretinoin by 1 year (60mg/day). And yes i do, i experienced significant decrease level of free testosterone, fsh, lh. And i was diagnosed with hipogonadism hipogonadotropic after taking accutane. Now i have to taking synthetic testoterone and things are slightly better, but obviously not as good as once were
i feel hopeless…
Matt says
Ever since taking Accutane I have had erection difficulties. I don’t get them nearly as often and I don’t get nearly as hard. I have noticed this while taking Accutane and after and it has not gotten any better. If anything it has gotten slightly worse. This is extremely embarrassing when with a girl and has resulted in losing every relationship (for the most part. I can’t say for certain in some relationships but I suspect it. Plus am told by them I am nice and attractive and fun.. their words). my friend has taken this drug as well and admitted a time he could not get hard. Not sure if happens every time for him, but I suspect it is. Personally myself I found it obvious that I was getting morning wood and involuntary erections during the day and then not. I cannot try to get erection when relaxing,only maybe with a lot of masturbation. When I do get an erection it goes away to 30% or less I less than a minute and that’s with me flexing my pelvic floor. Side note I have been doing kegels now for 5+ years and have a hydro extreme pump but it’s not helping. This drug has ruined the most joyful thing in a mans life.
Bryan says
ED went away for me! I just finished accutane about 3 weeks ago and just want to share my ED experience. To be honest, I didn’t know of this side effect prior to taking accutane. I’m 27 now and also took it when I was about 15 (back then I can’t recall ED issues). I was on the drug for about 8 months this time and I first noticed issues when I got intimate with someone..I just couldn’t maintain an erection..I didn’t know what was the issue, so I googled Accutane and ED and was horrified to read all of these stories. Whenever I used masterbate, I could never even get fully erect. I was about to give up the drug but I also wanted to clear my skin..so..I started to take vitmans (vitman d supplement and red ginseng (apparently both good for ED)) and to my amazement, I can get fully erect again..it’s only been 3 weeks but I’m noticing more improvements as the days go by :). I’ve only been seeing these improvements since finishing! Another reason why I stayed on the drug, was because my dermatologist said I had high cholesterol, which is very common when taking accutane and she said not to worry about it. I believe THIS is definately what caused my ED..as I googled ED and high cholesterol and they are linked. So in conclusion, ask your doctor about your blood tests and see if that’s what’s causing this. Before taking any supplements check with your doctor. I know I was unable to take multivitamins too, so I’m going to start these soon again and will report back… I hope this gives people hope!
EllM says
Dead in the body and dead in the mind. The only reason for taking accutane is because of growing up on a garbage diet of nutrient dead food and gut damaging sugar, wheat, pesticides. Eat keto/carnivore and get healthy.
Anna Nim says
My son was taking this, it was his second round of this medication. He was 2.5 months into round two. 9 days into increasing the dose to 3 pills a day. He made a comment that prompted further questions. He is having ED type issues. Basically, a shrinkage in size of his penis. Possible difficulty getting hard (in the morning). Terrified if it will get worse. Clearly he is off the medication now, but the effects on the body linger-so this issue could get WORSE as in the damage may get worse. I am terrified he may not recover.
Włodzimierz says
I’am 28 years old male. I’ve been taking accutane for 24 days (40mg a day). There are no side effects for now but im very scared about the sexual dysfunction, erection problems etc.that may occur in future. I wonder if there’s some way to protect myself in advance? Or to precise monitor internal Acuutane side effects to quit treatment before its too late ( unless when you notice its too late already?;/) The only way i came up with are regular testosterone (and other hormons) tests but i doubt if thats enough.
Do u have some ideas?
yedek says
I used only 1 week. I’m having this effect. I want to suggest solutions. please. yedekhesap466@gmail.com
Duarte says
I used for only 5 days and it should have been even less.
With almost no pimples I didn’t really need to take a medicine I just wanted to so I could have a nice clean face.
I took this pill and on the third or 4th day I felt a weird numbness on my penis.
Thought it could have been another medicine so I didn’t mind but didn’t forget.
Last night I felt my penis way smaller than normal and started to search. Thank God at least sooner than later.
My penis has been kinda numb all day and yesterday I sorta had a nervous breakdown so I couldn’t sleep thinking about this.
I am going to try and fight this and tell you where I’m at just so at least, if someone who took little dosage as me (20mg for 5 days) and comes here can have some idea of what to expect.
This is a shame, my doctor told me so quickly to use this medication for months and after 5 days I already have problems. It shouldn’t be this way.
My heart goes to all of you who suffered from this pill and I truly wish that you find the best way to deal with it.
Duarte says
It’s been a week and I’ve gotten a lot better.
I recovered the sensation from my penis. I get morning woods. I am able to masturbate and even cum. I just am not able to get my penis up without any stimulation and it takes a bit of time (like 20/30 seconds). My libido is weird, but it’s not gone like I felt it was at the beginning of the week.
It’s been a roller-coaster specially beacause of the anxiety and suicide thoughts I had at the beginning but it has gotten better. Way better specially in the sense of those thoughts.
I’ve tried to sleep as much as I can, I slept a lot this week facing up not to squish my penis. I told my family about this and they helped me mentally. I also told a doctor (not a urologist yet) and she calmed me a bit. I also drank A LOT of water.
As I said, I was lucky to stop on time for it not to get even worse and that’s all thanks to you.
I kept my promise of updating this because I want to shed a bit of hope for the people who at least are in the beginning of recovery.
I will update on the next week also.
Thank you very much
Duarte says
Almost another week has passed and I was able to get erection without touching my penis and even have sex.
I just have a problem that sometimes my erctions are like 70% what they used to be.
But overall I kinda recovered.
Wish you all good luck in your recoveries
Jeffrey says
How long did you take the medication till You stopped ? I been on it for a month n decided to stop since I’m getting the same symptoms . Am I too late ?
tjb says
i took it when i was 17, never had sex and will never be able to
Chris says
Before taking Isotretinoin look at the yellow Card data analysis. Yo can also look up other drugs like Doxycycline (many deaths).
The FDA has a website too where you can look up all reported adverse events of any drug. Remember though that only between 1 and 10% of people will ever report an adverse event. Nearly 1,400 Isotretinoin deaths reported in the US!
Did anyone know before they took the drug that suicidal ideation can persist be permanent and or occur once you stop taking the drug. Was anyone told about the high risk of sexual dysfunction and that this is why so many kids kill themselves once they stop taking the drug(others reasons too of course)? Who knew that the most likely time to commit isotretinoin suicide is up to a year after stopping treatment and that you should be monitored during this time? Does anyone agree that if victims don’t tell anyone about their adverse effects and then commit suicide months or years post the drug – then the connection between the suicide and Isotretinoin may never be recognise so there is a very good chance that there have been even more suicides than those we already know about?
Chris says
Isotretinoin review MHRA UK – anyone can email them with their experience no matter where you live in the world. You must state for the attention of the Isotretinoin EWG and ask that you be listed as a stakeholder and that you be kept updated. Please outline all your concerns. They are mostly considering sexual dysfunction, infertility and psychiatric issues including spontaneous suicides and post the drug suicides. Contact email is Leigh.Henderson@mhra.gov.uk
cc info@mhra.gov.uk Review date early February so please act now
Majid says
I’am 32 years old male. I’ve been taking accutane for 14 days (20 mg a day). My libido is almost gone. I searched and find this page. It is horrible. I will stop to taking this poisen pill.
Shezzy says
Update?
Anna Nim says
My son, my sunny boy, only child has been damaged by this drug. He has erectile dysfunction (size, girth, hardness, drive, etc). It is so bad he had to come and tell his mother about it. His T is only 475. He is 18. That is WAY below average for his age. Simply giving Testosterone or taking Viagra Is Not Enough. It is more complex. He is still a virgin, has not even graduated high school yet and my only child is HORRIBLY damaged. I myself want to kill myself and run around hysterical all the time in my mind in a panic, searching and searching websites. It is a nightmare that never, ever, ever ends. If you are going to say something inane like, ‘bad acne makes you depressed & not want sex’, just don’t. Not having a penis that works is SUICIDE.
John B says
Hello!
I created a group in Telegram (Link: https://t.me/bech17 ) and we are filtering content related to the 5AR inhibition syndrome, which affects people that took Isotretinoin (Accutane/Roacutan), Finasteride (Proscar/Propecia), Saw Palmetto and others.
There’s key articles and theories regarding it and screenshots (from other forums) with people that claim recovery.
If interested, contact me and I’ll share the invite to join.
Luana says
Hey everyone,
I took that poison pill for only 14 days, 30mg.
After a few days i noticed that i wouldn’t get aroused anymore.. i thought it might be normal because i kinda knew isotretinoin might surpress androgenic hormones and thought everything would go back to normal after the treatment.
a few more days later vaginal dryness became such a problem for me that i had issues doing sports and sleeping and i realised that i really lost sensivity down there, so i checked on the internet and THANK GOD i found this website and all of your reports. i was beyond shocked! thank you so much to each and everyone who shared their story and made me and so many other people aware of these truly develish enduring effects of this drug! i immediatly stopped taking it just because of you and god holding his protective hand over me and that literally saved my life!
the first days after stopping the pill i was depressed and scared that this genital anesthesia and loss of libido wouldnt go back to normal ever again. i seriously went down in my knees and prayed to god. i kinda knew he never left me alone with any problem so far, and i already had medical issues where he worked crazy wonders for me, he really did!
After some time my libido almost came back and the anesthesia or insensitivity faded. still i’m very dry. i’m not completely back to normal yet, but i won’t lose hope that its getting better. there is hope! and i wanna thank you so much again, i will pray for you and i’m sure there will be a solution!!! if anyone wants to talk about these problems and details, maybe under girls or also guys who have problems with their girls or any problems whatever, feel free to write me! i’m ready to be there for you! also in german language 🙂
and to the guys out there, please! dont feel ashamed about your issues!! especially dont feel bad in front of your girlfriends or woman in general! we are sensitive beings and we fully understand you and wanna support you and we love you! you can be open about everything! it will make you feel released and so much better. this is what actually makes you a man, not your penis 🙂 theres healing for everyone out there!! all the best for each and everyone of you! be blessed!
Lola Nicolas says
Hello! I recently just stopped because of vaginal dryness. I just wanted to ask how it has been since you stopped. Has the vaginal dryness improved at all? Thanks!!
Benjamin france says
Bonjour perso je suis sous traitement depuis 8 mois j’etait à 20 mg. Au bout de 2 semaines j’ai remarqué la libido mais j’avais de grave problème de peau alors j’ai continué, j’en ai parlé à ma dermatologue…. Bref ce médicament est en train de sauver ma peau mais moi qui aime le sex et le sex assez sauvage cela me fait vraiment peur qu’à l’après traitement je ne récupère pas ma libido… Depuis le traitement j’ai moin envie, mon sex deviens moin dure après quelque minutes de pénétration… Mes sentations sont pas terrible, mon sperm est aqueu, et mes orgasme vraiment pas terrible… J’ai peur de ce putain de medoc je suis à 5mg par jour en ce moment pour essayer de baisser les effets mais sa change pas grand chose
Jonny says
i finally found out what we all have. took accutane for 6 months and developed erectile dysfunction, loss of libido, loss of feeling. luckily, over a year my symptoms have started to get better. We have what is called PFS (look it up there is a whole forum). accutane and a hair loss product all have finasteride, which apparently doesn’t react well w certain genetic builds.(us) my suggestion is get off this forum and go look up PFS and make noise. there is no cure but sounds like they r working on it.l and lots of ideas are being thrown around to help with this. good luck, and remember the world doesn’t give us stuff we can’t handle. we got this
Ben says
Des améliorations encore ?
Vanya says
Hi,
I had bad acne my entire life, so after I turned 40 and still had really bad acne breakouts, I decided it was time to address it with a radical treatment. All other treatments I tried before weren’t effective. I was tired of bad acne.
So, I found a dermatologist who advised that I could try Isotretinoin. He put me on 40 mg/day based on my weight, but within a few day, I got what seemed to be an allergic reaction, with patches of red and itching skin around my wrists. It looked like I was burned or had a sunburn. So, I discontinued it and went to see the dermatologist gain. He deiced to lower the dose to 20 mg, and I stayed on it for about 2-3 weeks or so. I was not having the allergic reaction, but of course, my lips were dry and peeling (everyone pretty much has this effect), and my joints started hurting. I was very athletic, working out twice a day for an 1.5 hours each time at a gym. So, 3 hours of working out per day with 1.5 of it being cardio and 1.5 hours weights. I swam for 1.5 hours straight for my cardio (no stopping) and ran 1 hour straight (alternating days). People thought I was 25 years old, while I was 42. Lean, muscular, fast, etc. I was also on top of my game mentally. Was an engineer working on very challenging projects and was a top subject matter expert in my field.
After being on Isotretinoin for 3 weeks or so, I noticed that running became painful. My ankle joints were aching like I never experienced before. I knew of that side effect, so I thought it was temporary. I switched to swimming instead of running, and it appeared to be okay. I then went on vacation to Israel for 3 weeks and I wanted to run along the Mediterranean Sea every morning for about an hour. I thought it would be an experience of my life to do it, and I didn’t think it would be any problem because for me running for an hour had been a piece of cake. I quickly figured out that it became very difficult for me to run for an hour due to aching and pain in my feet and legs. This was a very new sensation for me, as I never experienced that before. Moreover, I started having pains in my feet and in my toe joints. So, I didn’t end up running every morning, but I was still doing a lot of walking in Israel (sightseeing, etc.) Upon my return to the condo, I couldn’t even step on my feet, they were aching so much. This had NEVER happened to me before.
As I was in Israel, I decided to check out the price of Isotretinoin in the local Tel Aviv pharmacy. I found out that without insurance, the price of the drug was 1/4 of what I paid for it in the States with insurance. By the way, the price of this medicine is ridiculously high in the States. So, I figured that I would buy the entire course of Isotretinoin in Israel and bring it back to the US. It was a quality product made by a Swiss company. This was not a generic, but the real deal. So, for about $1,000 USD, I bought myself the entire course of Isotretinoin, which is 9g total. The dosage they had in the pharmacy was 10 mg dosage, so even though I was prescribed 20 mg, I decided to buy the 10 mg dosage with 9 g total. That’s 30 packs of 30 pills each (900 pills) for $1000 USD. Not bad. In the States, I would have spent $5,000 for the entire course, and that’s with my insurance.
So, I came back to the US. The US Customs had no issues with my load of pills. However, I continued having the aching in my legs and feet, and now my hands started to ache too (I type a lot on a keyboard). So, I decided to lower my dose from 20 mg per day to 10 mg per day, and I was glad that the pills that I bought were 10 mg pills, so I didn’t have to split each pill in half. Because of the low dose, I ended up staying on Isotretinoin for 4 years. This is a long time to be on medicine. I was able to maintain my lifestyle. I was still able to run several times per week, but running became painful and unpleasant. Typing was fine, though. I was living in the US, so I mostly drove everywhere – I never had to walk the entire day. I was able to swim and I was able to do weights, but my physical fitness level was significantly lower than before I started on this medicine. I also had a new job, which ended up being the worst job in my life. Gradually, I became more and more depressed. My physical shape was declining, I was gaining weight (slowly but surely), my outlook changed from positive to negative, my go-getter personality became the opposite. I no longer wanted to achieve things in life, etc. This was happening very slowly, so I didn’t notice my decline until it hit me hard that I had become a different person. I was also having suicide thoughts more and more, but I knew that the suicide thoughts were a known side effect, so I chalked them up to the medicine I was taking.
I finally reached my 9 g combined dosage four years later. By then, I was in my mid-40s, I gained 15 lbs, I was no longer athletic, I was stressed out of my mind, I screamed at my family, and I generally was thinking that I would rather die than continue living like that. I had lost all the desire to live.
Now, 4 1/2 years after I discontinued Isotretinoin, I have gained 30 lbs, I can’t run longer than 2 minutes, I lost most of my muscle mass, I am disgusted to look at myself in the mirror. I have no acne, though.
As for sexual health, I had never had the problems that are described here, but I also lost any desire for sex. Pretty much I now feel like an old man without acne.
Was this worth it? I don’t know. I am glad I have no acne, and the issues with the loss of desire to achieve things in life, weight gain, etc. could be attributed to me getting older. I have just turned 50. I still don’t look 50, probably mid 30s or so, but underneath the skin, I feel old and used up. Maybe it would have happened anyway, or maybe it would not have. I have been to many doctors, including functional medicine. They can’t really find anything wrong with me. I’ve done a battery of tests, which cost me many thousands of dollars, and no diagnosis.
After I discontinued isotretinoin, I developed a petic ulcer, which ruined my life for over 3 years. I barely survived that, and it destroyed me even further. Was the ulcer caused by Isotretinoin? I don’t know, but I suspect so. If it makes your skin peel on the outside of your body, god only knows what it does to your stomach and intestines on the inside. I actually had this concern and asked my dermatologist about it, but he told me that the effect you see on the outside doesn’t happen on the inside. I’m no expert in that, but I don’t think the three years of suffering over an ulcer (and I don’t wish this on anyone because it’s simply a lucky outcome if you die from it quickly than suffer from it for over 3 years). I’m now more or less recovered from the ulcer, but I have a host of other symptoms. Constantly being cold (even under a hot shower), not being able to warm up, loss of sensitivity in feet and hands (that comes and goes), having no energy at all, not being able to focus mentally, severely depressed, developed a heart arrhythmia (whereas my heart was that of an athlete), etc.
On the other hand, would I want to live with the acne that I had? I don’t think so. Was it worth it? I don’t know. Nothing seemed to have been able to help my acne other than Isotretinoin. Mind you, I was on an extremely low dose (10 mg), which they call the maintenance dose. A lot of people have to get on this dose after they achieve their total Isotretinoin intake, which for me was 9 g. I haven’t had to get back on Isotretinoin, but again, I was taking it for 4 years, whereas most people are supposed to complete the course in 9 months. So, who knows? Maybe my longer course affected me in a way that a shorter course would not have. I know for a fact that I couldn’t stay on 40 mg/day, but perhaps I could have managed 20 mg/day for 18 months. Maybe the outcome with other symptoms would have been different.
Landon says
I started taking Accutane when I was 13-15 for bad acne mostly in the face. Puffy, oily, hormonal acne. I took it for 1-1.5 weeks before the back pain was so painful I stopped cold turkey. My doctor never said anything else. The name of the accutane starts with a Z but I forgot. Anyways. I am now 17, and my life is utter hell. The acne or inflammation has spread all the way down to my wrists. I cannot take my shirt off ever. I have Keloids forming all the way down a little past my elbow and my back I have too many to count. I really think accutane has ruined my skin for good. I have both hypertrophic scarring and keloids like I said that keep going down my arms and all the way to my wrists. I have a new doctor now and all she can recommend is that I take Prednisone for 4 weeks and then reintroduce accutane again and hope for the best. I could literally play in a horror move as the monster without any makeup or props. I am now day 3 into prednisone. I am scared that prednisone is decreasing my testosterone which scientifically it is going to because prednisone turns into cortisol. Also the accutane has been known to ruin sex life. So… I also wanted to talk about my personallity. I am known to be a very science and common sense person and don’t like to waste time on pointless things. I don’t know if this is from accutane or if people develop into this over highschool. I want to warn parents and kids. This medicine has ruined my skin with hundreds of keloids and hypertrophic scars all over my back chest arms shoulders. And I don’t feel real. The only thing that keeps me ok is knowing that I can take anabolics when I get off of this. Once I am done with this shit im out. Never again. Hope is the only thing that has kept me trying.
Peter says
Hi! I’ve been following the comment section of this post for several years now, the side effects that people on here had really scared me away from tretinoine. But then again, I had cystic acne with scarring for 14 years now and the last 2 years I couldn’t deal with the deep cysts anymore. Since antibiotics seemed to work for me (as long as I take them regularly), I’ve been taking doxycycline and later minocycline for 2 years now, everyday. I’ve developed several symptoms, the worst being a constant fatigue. Every dermatologist I’ve seen so far wanted to put me on tretinoine right away and told me that what I’m doing now has most likely more adverse effects on my body than the tretinoine, but I’m still unsure. What a decision to make…
Sueno says
Si c’est incurable prend accutane. Moi j’avais une acné foliculite incurable c’est le seul truc qui a marché pour l’instant je suis guéri depuis 8 mois. Mais j’ai perdu 30 pourcent de les capacités sexuelle
Shafi says
I took it for 11 days.
I loss my labido completely.
Any obe recovered after using it for 2 to 3 weeks …
Please help
luana says
hey, yes i did, and you have a very good chance to heal up too cause you took it for a short time! wishing you the best and dont lose hope, it might take some time!
Sara says
Hi did you heal…? I took it for about the same time and it’s been over 6 months and still experiencing symptoms
Eve says
The effects are devastating. To live through this daily is really a struggle. It has been years and I’m not sure if I have hope anymore.
jamie says
Check this forum out, there are some experimental options if you are willing to try. Namely related to progesterone signalling – [https://www.pasforum.info/threads/progesterone-theory-of-pas-flynn.168/]
Notme says
Since I took Accutane as a young guy at the age of 15 my life is so messed up. A living hell. Everyday is humiliating and my dignity was taken away by this drug. Now I’m almost 30 years old and nothing changed. Life is not easy at all. I wish I never took it but its too late fore me now. Do not take accutane its a poison.
nikos says
Isotretinoin is also associated with permanent sexual side effects, namely erectile dysfunction and reduced libido. In October 2017, the UK MHRA issued a Drug Safety Update to physicians in response to reports of these problems.This was in response to an EU review, published in August 2017, which states that a plausible physiological explanation of these side effects “may be a reduction in plasma testosterone”. The review also stated that “the product information should be updated to include ‘sexual dysfunction including erectile dysfunction and decreased libido’ as an undesirable effect with an unknown frequency”.It is real?
LRM says
My son is a year off of Accutane and has all the sexual side effects. He is very distraught about the irreversible nature as he is only 18 and heading off to college. Can you give me anything that he can do right now to improve his symptoms? I am hopeful about all the research you are doing, but we really need something tangible to do right now. ANY recommendations would be appreciated.
John says
I took accutane when I was 21 yo for roughly 5 months. When I was on the medication my libido was higher than ever. About a month after discontinuation, its like a switch flipped off in my brain. My libido went from extremely high down to almost nothing. Had pretty bad ED. Difficult to have a relationship for the next 2 yrs because I couldn’t get it up and didn’t know it was because of accutane until I started reading more about it on the web. Viagra/cialis helped some. Hormone levels were normal and the doctors told me i was perfecrly healthy and there was nothing they could don for me.
I wasn’t depressed, but worse part was the emotional anhedonia and feeling like I was a zombie for a couple months.
I did research on water fasting after hearing some accutane users have used it to help heal their brains/bodies. Water fasted for about 16 days 1 yr after accutane use. Libido almost back to normal and ED completely gone. Symptoms seemed to continue to improve several months after the fast. At age 32 libido is back to about 90% pre-tane. Have had episodes where symptoms temporarily worsen but water fasting always seems to get my brain back on track.
Good luck to everyone who has suffered from accutane. Hope you find relief!
James says
I, too, was told my testosterone was normal. The urologist told me that it was in the normal range but at the low end of normal. If this is the low end, I think this is too low.
j says
As a 16 year old who has taken acne medication for 6 years and then put on the stronger stuff for 3 months, i have experienced sexual dysfunction, every since i started taking the stronger stuff, my penis hurt all the time, it was smaller when flaccid, i lost about an inch ever since, i used to be 7.7 inches, i havn’t been able to run, or excercise, or have a normal teenage life. Before taking the medication, i had erections usually every 20 minutes, and nocturnal ones that kept me up at night. Now, i have no interest in sexual activities, and some days i go sun up to sun down without getting hard, (i am still 16)
I have experienced depression and been crying a lot, i stopped talking to everyone in school and lately i been thinking about killing myself. Sometimes the tip of it is cold, like its not getting enough blood, and i been noticing a curved erection starting to kick in, as a 16 year old male, this has ruined my life. DO NOT TAKE ACNE MEDICATION. EVEN THE STUFF THAT IS A COUPLE NOTCHES DOWN FROM ACUTANE CAN STILL HARM YOU JUST AS BAD.
nikos says
An oral daily dose (mean +/- SD, 0.75 +/- 0.05 mg/kg) of isotretinoin was administered for 3 months to six male patients with acne (scores of 4 and 5 according to Rosenfield). The therapy resulted in complete resolution of acne in four patients and improved acne significantly (score 1) in two patients. In accordance with recent findings, no change in serum testosterone and significant decreases in 5 alpha-dihydrotestosterone, 5 alpha-androstane-3 alpha,17 beta-diol glucosiduronate, and androsterone glucosiduronate levels were observed after treatment. Androgen receptor status was investigated in back skin biopsies obtained in acne areas before and after 3 months of isotretinoin treatment. The treatment did not modify the binding affinity constant of skin androgen receptor (0.44 vs. 0.32 nmol/L), but it did induce a 2.6-fold decrease in its binding capacity constant (62 vs. 24 fmol/mg cytosolic protein), as assessed by Scatchard plot and confirmed immunologically by Western blot analysis. These data clearly showed that skin androgen receptor was sensitive to oral isotretinoin administration in acneic patients. The decrease in skin androgen receptor levels (this study) and the recently reported suppression of skin 5 alpha-dihydrotestosterone production by isotretinoin treatment appeared consistent with the involvement of androgen receptor and 5 alpha-dihydrotestosterone in the pathogenesis of acne. Indeed, sebum production is under androgen control, and an abnormal response of the pilosebaceous unit to androgens appears to be implicated in the pathogenesis of acne. These observations were consistent with the absence of sebum in complete androgen-insensitive patients and normal sebum production in male pseudohermaphrodites. The treatment did not modify the binding affinity constant of skin androgen receptor (0.44 vs. 0.32 nmol/L), but it did induce a 2.6-fold decrease in its binding capacity constant (62 vs. 24 fmol/mg cytosolic protein) . This is the problem.
Jeff Martinello says
I started taking Accutane my first year of high school. I had what was called Cystic Acne. One of the worse cases of acne. I tried everything under the sun then my Doctor told my mom and I about a new drug that was very effective treating Acne called Accutane. He told us about the side effects nose bleeds, dry lips, headaches. Never once mentioned about sexual side effects. I’m 51 now. and have been dealing with EDD for 30 years That before could be masked by Edd meds Cialis, Viagra, Now I avoid dating the issue has gotten so bad. All these years I thought t was in my head it was my fault maybe stress , I’m not eating Healthy enough getting my sleep , testosterone is is to low. Wasn’t attracted to my now ex wife.
I told the doctor when I was 35 that I need a prescription of Cialis on a regular basis that my wife is going to leave me. It never saved the marriage the damage was done for to long. Please don’t take this medication I’m a young 51 Healthy other then EDD lots of opportunity to date but instead I stay home or don’t respond back. Absolutely awful medication.
Luana says
Hey everyone! After a year of being off accutane i’m back here to give you some hope! as i said, i had been almost totally numb down there because of accutane and extremely dry. Thank god everything came completely back to normal, it took some months. God never leaves us alone, for everyone struggeling, pray 🙂
I’m convinced i have been healed by his grace.
and for everyone who thinks about taking it, really really please dont! i could get a good skin condition now with daily retin A topic 1%, fucidin cream, progesterone cream, estriol cream and moisturizer. i use all of these everyday and i go to stronger laser treatments (ipl is usually not effective enough) to get permanently rid of all facial hair (also the hair you cant see) cause the inflammation rate is highly decreased when there is no hair follicle in the skin.
i wish the very best for all of you, never lose hope, each of you can get healed up too!!!
James says
I came across this article a number of years ago while looking for help with my erectile dysfunction. Re-reading it again, having been under the care of a urologist for quite a few years now. I find it interesting that some of the things mentioned in the few studies that have been done mention things specifically that the urologist mentioned: low testosterone caused by the pituitary gland deciding to cut back on production. Although my urologist won’t connect the dots, I think it’s safe for me to do so.
Joe says
How has there not been a class action lawsuit for this?
NIKOS says
Question,they have post accutane syndrome ,with Tadalafil do not have ED
nikos says
HELLO, I WANT TO ASK YOU A QUESTION TO UNDERSTAND IF I HAVE THE SYNDROME OR PSYCHOLOGICAL SEXUAL DYSFUNCTION. WHEN YOU TAKE TANTAFALID CAN YOU HAVE ERECTION OR DO YOU HAVE Erectile Dysfunction?
Jay says
Hi all, I took this poison at the age of 16 and noticed right away that my penis was dead, which got me depressed and that got me taking SSRI treatment. Which further screwed up my sexual health. I stopped getting boners after taking accutane at 16 years old(just sad and unbelievable. I became a regular gym goer at 17 and developed muscles and good lean physique which gave a boost to my testestrone. I met a girl at 21 and had a romantic relationship. I could get hard for her after a good session of french kissing. And sometimes needed to masterbate to get it hard initially, but we had great sex, I could not keep up in some positions like she being in top, missionary and other positions worked fine. i did have problem with premature ejaculation, which I tried to control by doing kegels and 2nd round was always better than the first one. Keep in mind to use full breathing exercises. Method I used was get hard by masterbation, once hard use breathing techniques to stay hard also hold your kegel like you do when stoping to pee. However at 30 I still don’t get boners. I have been taking llalgerine supplement which is amino oxide, I have been waking up with partial morning wood. I masterbate daily to get blood flowing down there. I think accutane blocks the smaller veins in body which is a side effect of vitamin A. Accutane causes vitamin A toxicity from what I have learnt online. My advice is, keep a healthy lifestyle take vitamins and food supplements. masterbate to get the blood running down there. I hope you find recovery well. My next step will be to get soundwave therapy for penis. Waves will break any plaque in penis and help grow new veins for better blood flow. I will also get a p shot. Both are expensive. hope for the best. What worries me is that if this happen to penis, how bad is the damage to the heart and other organs? Take care and try this stuff I mentioned. Thank you for reading.
Andy D says
Soundwave therapy is a waste of money in my opinion – Spend 3 grand on it. Save your money. Haven’t had P shot so cannot comment on that one.
I am 29 years old. It’s all marketing – easy money for doctors / clinics./
The only thing that somewhat helps is Cialis and working out and having an understanding loving partner who loves you.
nikos says
An oral daily dose (mean +/- SD, 0.75 +/- 0.05 mg/kg) of isotretinoin was administered for 3 months to six male patients with acne (scores of 4 and 5 according to Rosenfield). The therapy resulted in complete resolution of acne in four patients and improved acne significantly (score 1) in two patients. In accordance with recent findings, no change in serum testosterone and significant decreases in 5 alpha-dihydrotestosterone, 5 alpha-androstane-3 alpha,17 beta-diol glucosiduronate, and androsterone glucosiduronate levels were observed after treatment. Androgen receptor status was investigated in back skin biopsies obtained in acne areas before and after 3 months of isotretinoin treatment. The treatment did not modify the binding affinity constant of skin androgen receptor (0.44 vs. 0.32 nmol/L), but it did induce a 2.6-fold decrease in its binding capacity constant (62 vs. 24 fmol/mg cytosolic protein), as assessed by Scatchard plot and confirmed immunologically by Western blot analysis. These data clearly showed that skin androgen receptor was sensitive to oral isotretinoin administration in acneic patients. The decrease in skin androgen receptor levels (this study) and the recently reported suppression of skin 5 alpha-dihydrotestosterone production by isotretinoin treatment appeared consistent with the involvement of androgen receptor and 5 alpha-dihydrotestosterone in the pathogenesis of acne. Indeed, sebum production is under androgen control, and an abnormal response of the pilosebaceous unit to androgens appears to be implicated in the pathogenesis of acne. These observations were consistent with the absence of sebum in complete androgen-insensitive patients and normal sebum production in male pseudohermaphrodites. The treatment did not modify the binding affinity constant of skin androgen receptor (0.44 vs. 0.32 nmol/L), but it did induce a 2.6-fold decrease in its binding capacity constant (62 vs. 24 fmol/mg cytosolic protein) . This is the problem. “Cells in the brain have testosterone receptors that significantly affect mental health. Men with low
testosterone can experience fatigue and commonly have mood swings,”
PaidthePrice says
I took this medication when I was 21 years old. It worked for the acne. It cleared it right up. It also wrecked my testosterone levels. I didn’t know what the issue was for years. I finally had my testosterone levels tested at age 32 and my levels were under 200 (much like an 60+ elderly male). Getting my levels back up to a normal level has helped my mood immensely. But I will have to take injections for the rest of my life at a high financial cost. I wonder how my life would have been without this drug. If anyone stumbles upon this, then i would NOT take this drug. I had a pizza face, and this drug worked for the acne…and it destroys so much more. Live with the acne, it is better than altering your hormones for life.
nikos says
Like the antibiotics we take for the mouth, they work in all the organs of the human body and in the brain, so acuttane since we take it orally makes sense to activate the testosterone receptors in the brain as well. and the dreams we had every night for women and having erectile dysfunction in front of a naked beautiful woman.
It would be good to do some research on what happens to the binding capacity of testosterone in brain cells by ROCHE.
nikos says
We don’t know for sure, but one theory as to why some drugs cause long-term side-effects revolves around epigenetic changes to DNA expression.
These changes may be caused by an indirectly acting drug like isotretinoin. Isotretinoin has transcription factor activity, meaning it can alter transcription factor activity at gene promoters, resulting in the altered expression of receptors, signalling molecules and other proteins that can alter genetic regulatory circuits. Meaning, the drug can permanently alter the instructions a gene gives to the body.
When the drug is taken for an extended period of time, cells adapt, with more permanent modifications to DNA methylation and chromatin structure, ongoing. This process is what can cause a drug’s effects to continue on even after the drug is stopped.
This epigenetic hypothesis could explain many other conditions that occur post-treatment such as tardive dyskinesia
Brett says
I took the accutane drug 8 years ago, I’m coming on to this forum to become apart of the mass who is condemning this drug. My conditions as far as I can see have not changed. I have many friends that are girls but have no feelings for any. I cannot get horny, I haven’t been able to get horney since I was 17. I’ve learned to live with it but I’ve thought about taking my life more than a couple of times. After a while I learned to make peace with it. I feel like I could have a relationship with a girl but there will always be something missing. I’m both happy and sad to see that I’m not alone. For ED I do kegal exercises, that helped me out, but I have to say, this is a special kind of hell.
M says
I am a 53 year old man. I had acne during large parts of my life, on and off. Currently it was so bad that I really really wanted something that worked. I was given Roaccutan gel, a 30g tube of gel to apply to the skin. I used that. It gave me dry lips and was obviously going into my blood stream. But then I had several skin wounds from acne that did not react well to the gel (and the alcohol in it), so I asked for a different product with the same agent (Isotretinoinum or Isotretinoin). The doc was on vacation and another wrote me a prescription for the oral form. I decided to take the pill just for a few days, until my skin wounds would heal, then return to the gel. I then took ONE SINGE 10mg pill of Isotretinoin. The next day I noticed I had no more feeling in my penis and I could not get an erection anymore, no matter how much I masturbated. This after having had massive morning wood every day before this. And after having been without sex for 2 weeks and being very horny before taking the pill. I was able to trigger an ejaculation then, but without any erection at all, and with no orgasm. Everything felt completely desensitized down there. Of course I threw all Isotretinoin drugs away then. I also took large quantities of Omega-3 fish oil because I read a study where it protected the testicular tissue of while mice which were given Isotretinoin:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9575098/
Two days later I could have almost full erections again, orgasms worked again as well. This despite not having any feeling in the tip of my penis. Now, 5 days after taking the pill, the feeling in the tip of my penis (glans) is still completely gone. Like 98% gone. It’s totally numb. Feels like touching a piece of rubber. The only thing I can feel very weakly is if I pinch it very, very hard with my fingernails. Anything else, absolutely no feeling.
It’s been 5 days now after taking just one singe 10mg pill with no change or difference at all in the feeling of the tip of my penis. Virtually absolutely no feelings anymore in the glans of my penis.
I sure hope this might get better again. Jesus, just a single 10mg pill can destroy your sexuality. Possibly permanently. This drug needs to be outlawed. Worldwide. Especially since they don’t even mention these side-effects in the product. No wonder, nobody would buy it or take it anymore.
I read online that it’s been withdrawn from the US market “voluntarily” by the Swiss company (Roche) that produces and sells it. For fear of lawsuits, I assume. However, here in Europe (with a worse justice system) it’s still sold, without mentioning any kind of sexual side effects, and with dermatologists not educating patients that this drug can destroy their sex life, their libido, their genital feeling, etc.