Accutane is to the holistic acne treatment folk what Monsanto is the organic folk: pure unadulterated evil that can do no good. The drug is universally demonized in the natural health community, and hot on the heels are lawyers eager to scare people into signing up for a class action law suits.
It is said that truth is the first casualty in every war. It’s certainly true in the war the natural health folk and lawyers have declared on Accutane. In the midst of all the fear-mongering, nobody presents rational, balanced and science-based discussion of the risks and benefits of Accutane. So I took it upon myself do just that.
I knew I had to write this post when a reader posted the following comment on another post where I talked about a study showing new side effects from Accutane.
Here’s the comment she posted.
Hi! 🙂 i read your acne history and noticed that you have taken accutane. I have a couple of questions on my mind and hopefully you have time to answer, i’d really appreciate it because I too have taken accutane and now i’m kinda scared of having done damage to my body. How old were you when you took accutane and how old are you now? Have you been healthy since taking it? based on your knowledge, do you think that accutane can cause any kind of long term damage or premature aging?( there are so many people on the internet speculating that) and don’t all medications cause at least some oxidative stress? and have you run into any studies about if accutane inhibits cellular proliferation even after discontinuation of treatment? and does accutane really destroy water holding molecules in the body?
I’m going to answer all the questions she asked, but before that I want to put all the Accutane injury stories and fear-mongering into perspective.
Are Accutane injury stories the result of a logical fallacy?
If you’ve researched Accutane you’ve no doubt read stories of people claiming to be injured by Accutane. I suggest you take them with a grain of salt. Here’s why.
We humans have a strong need to make sense and feel in control of our lives. We absolutely abhor the notion we are not in control. So when something bad happens, we demand to know how and why it happened. We need to know the cause and who to blame. We demand to be in control, even if it’s only illusionary.
But nature is inherently random. When a predator kills a prey, there’s no grand design or intention involved. The predator was hungry and the prey was in the wrong place in the wrong time. Virus infecting a person is not driven by a grand design, it merely exploits an opportunity.
People born with genetic abnormalities do so because of randomness inherent in multiplication of genes. Those mutations drive the evolution of all life on earth. Some mutations are beneficial, the vast majority are not. It sucks to be born with harmful mutations, but since life itself depends on mutations, the process goes on. Nature is a cruel mistress, indifferent to the plights of any individual.
This inherent randomness in life doesn’t play well with our need to understand and be in control. Interesting side note: pretty much the entire alternative medicine field is built on peddling the illusion that we have more control over our health than we actually do.
We frequently torture logic and reason while trying to make sense of the world. One of the most common logical fallacies we commit is the post hoc, ergo propter hoc (Latin: “after this, therefore because of this”) fallacy. When B happens after A, we assume that A causes B – simply because it happened after A.
The entire vaccines cause autism fallacy is based on this loopy logic. Parents start to notice the first signs of autism at around 18 to 24 months, which is just a few months after some vaccinations. Aided by ‘education’ from the university of Google, some parents mistakenly conclude that the vaccine caused autism. I say mistakenly because studies have clearly shown no connection between vaccines and autism. Furthermore, studies have shown signs of autism already much earlier, even in the womb. These signs are just too subtle for parents to notice.
My point is that just because some people noticed some health problems following Accutane treatment doesn’t mean Accutane caused those problems. Millions of people experience unexplained health problems every day. Millions of people take Accutane every year. Purely by coincidence there are going to be people who experience unexplained health problems shortly after taking Accutane.
I want to make it clear that I’m NOT saying this explains every story out there. I’m sure some people have really been injured by the drug. But just because someone claims to be injured by Accutane doesn’t mean he or she is right.
Putting side effects into perspective
Accutane is a powerful drug that causes side effects, in some cases severe ones.
Because of the potential for harm, there’s an ongoing effort to better understand and minimize the side effects. In 2013 alone 53 scientific papers were published that talked about the adverse effects of isotretinoin (the generic name for Accutane).
By all reliable accounts severe side effects are very rare.
Dr. Marius Rademaker reviewed patient records of 1743 people treated with Accutane. About 81% of the patients reported side effects. However, the vast majority of these were mild (70.1%) or moderate (9.8%). Only 3 patients (0.17%) reported severe side effects, 2 of which were birth control pill failures. Side effects were dose-dependent, so those who got a lower dose reported fewer and milder side effects.
Accutane and gastrointestinal damage
Many people claim Accutane causes intestinal damage, some people apparently had to have their colons surgically removed after treatment. Dr. Raed O. Alhusayen and colleagues compared the rates of inflammatory bowel disease (IBD) between people treated with Accutane, topical acne medications, and general population. Their analysis included data from 46,992 people treated with Accutane, 184,825 people treated with topical acne medications and 1,526,946 untreated individuals.
They showed that Accutane did not increase the risk of IBD. Among people diagnosed with IBD, taking Accutane did not increase the risk of hospitalization (due to aggravation of IBD). In other words, this massive study showed no connection between IBD and Accutane. The study did show a possible connection between IBD and acne itself. I’ve covered the link between gut problems and acne extensively in other posts.
Does Accutane cause depression and suicides?
Some people claim Accutane causes depression and increases the risk of suicides. That data on this point is not as clear as for IBD. While most studies show treatment with Accutane does not cause depression or suicides, we can’t yet rule out the possibility.
Regardless, the possible increase in risk seems small. A Swedish study showed 1 additional suicide attempt for every 2300 new 6-month Accutane treatments, that’s 0.04%.
Man boobs, blindness, and kidney injury: reports of serious problems
Rare as they may be, serious side effects can and do occur. Here are a few case studies published in the recent years. A 17-year old girl developed an acute kidney injury after Accutane treatment. Fortunately, her kidney function recovered in 5 weeks after stopping the treatment.
Another case report talks of a 19-year old woman who started bleeding on her left eye and consequently lost vision on that eye. I don’t have access to the full-text of that case report and can’t say whether her vision recovered or not.
Yet another report talks about a 20-year old male who developed gynecomastia (man boobs) after taking Accutane.
Update: Sexual dysfunction as grossly under reported side effect?
I’ve recently learned that erectile dysfunction, vaginal dryness and other sexual side effects may be grossly under reported. None of the reviews I read made any mention of these. However, Mexican researchers published a paper in 2005 that showed 6 out of 20 men suffered erection problems as a result of taking Accutane. Whereas only 2 out of 35 people taking minocycline (control group) reported erection problems. Accutane increase the risk of erectile problems by whopping 600%.
If true, these are very alarming results! It’s nothing short of an outrage that in 9 years nobody has followed this up with another study. Because this is the only study looking at this, it’s impossible to say how common these side effects are. What I can say is that you can find hundreds of men who complain about this online.
In the Mexican study the symptoms faded over time and all the men were able to have and sustain normal erection. But not everyone may be so lucky. There are reports of men complaining that the problems have persisted for years.
Life permanently ruined by Accutane
Just to make it clear that Accutane does sometimes cause extremely severe and permanent side effects, I’m going to share with you one such experience. This was sent to me by a reader and I’ll keep it anonymous.
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“I suffered from acne since i was a teenager. At first it was quite mild but later became severe to the point where i had multiple cysts on my back and face. Topical treatments didn’t work so when i became 18 and was about to go to college my doc decided that accutane would be the solution so i started my 1st accutane course. This is where the first side effects manifested. During the first days of my course i experienced a terrible acne breakout which left many scars. It was so serious that i decided to stop the treatment after only 15 days. This was the only side effect i got but acne didn’t clear up as 15 days was not long enough to clear my serious acne.
The nightmare starts
4 years later and as my acne didn’t get any better i decided to give accutane a 2nd try.This time no initial breakout occurred and i thought that everything would be fine and my acne nightmare would finally come to an end.I was so wrong.During my 2 month treatment i experienced some serious side effects which i though would go away after treatment stopped.
Vision ruined by retinal detachment
My first side effect was that i started not being able to see at night with my left eye.I though it was because of the night vision impairment that accutane is well known to cause. Later during the course i noticed that my daytime vision in my left eye also deteriorated so i decided to visit an ophthalmologist. I was devastated when he told me that in my left eye the retina had been detached! This meant that my vision deterioration was not due to the cause i though it was previously. I had a surgery immediately the next day after the diagnose in order not to lose any more vision. My vision acuity in my left eye never returned to normal levels. Not only did accutane cause a permanent impairment in my vision but i was surprised when i found out that my myopia increased by 2 diopters in both eyes!
Libido ruined
Unfortunately this was not the only side effect i experienced. I noticed during my course that my libido dropped significantly. Also the sexual sensation on my genitals pretty much disappeared. Again i though that such side effect would be temporary as it was not even stated in the drug leaflet! 6 years have passed since then and my libido hasn’t come back. Not only that but it has actually gotten worse. Moreover i have developed erectile dysfunction and anorgasmia because of the fact that i can no longer get sexually aroused.
Aggression and rage
Another permanent side effect that experienced was extreme aggression and constant rage. I managed to get rid of this side effect by taking antipsychotics for a while.
The drug has permanently affected my life resulting in a severe degradation of my quality of life. The permanent side effects make it difficult for me to develop relationships with the opposite sex. In general i enjoy life a lot less and the psychological negative impact of the side effects has been furthermore disabling.”
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Side effects like these are rare, but I wanted to share with you this story just so you understand they can and do happen occasionally.
Medicine is always a risk vs. benefit calculation
There are no 100% safe medications. Anything that has a potential to do good also has the potential to do harm. Think about it, in order to have a positive effect a medication has to affect the biochemistry in your body. And there’s no way to exactly predict what happens when you mess up with the biochemistry.
Think of the biochemistry in the body as a huge tangle of yarn. Your goal is to move a specific end of a yarn by pulling at another yarn at the opposite side. Do you think it’s possible to move just one piece of yarn? Of course not. The moment you pull at one yarn you are going to move several other yarns. That’s not unlikely how the biochemistry in your body works.
This applies equally to natural (herbs and supplements) and prescription drugs.
All medication is inevitably a decision to balance risks and benefits.
From what I’ve read, it seems that Accutane is about 85% effective against acne. That is, 85% of the patients get very good results. Is that enough to justify the severe but rare side effects? That I can’t answer for you. I can only report the facts, but the ultimate decision rests on you.
Scaring people is easy, informing less so
Scaring people is very easy. Just about every day some scientifically illiterate food blogger spreads unfounded fears of common foods. Fear is a powerful emotion and once that seed is planted, it’s difficult to get out. Studies show facts linked to fear are remembered much better than other facts.
Stories that evoke fear and anger are also great for social media. They get shared like candy. By contrast science-based and balanced discussion is bland, easily forgotten, and left unshared.
So had I been social media savvy, I would have titled this post something like this: “Accutane robs sight from 19-year old, sweet girl – also causes man boobs and kidney damage”. Technically I would have been correct. With an alarming headline like that, this post would have been shared widely in the social media and alternative medicine sites.
It’s easy to twist facts to support your bias when you can forget pesky things like truth and balance.
But I don’t think such a post would have helped you. I don’t think Accutane is the right choice for most people, and I think there are better ways to get over acne. But regardless of what I think about Accutane, you have the right to decide what’s the right choice for you. And you need honest, unbiased information to do that.
My point is that all the fear-laden blog posts and Accutane injury reports tell more about the nature of humans than about Accutane itself. They represent the 0.2% of cases as if they are what happens to the majority.
With the self-righteous navel-gazing out of the way, let’s go through the questions.
Accutane questions answered
I too have taken accutane and now i’m kinda scared of having done damage to my body
Well, is there something wrong with you? Have you been diagnosed with something? If not, you might want to read this: Cyberchondria: How the Internet Is Making Us Paranoid About Health.
How old were you when you took accutane and how old are you now? Have you been healthy since taking it?
If I recall correctly, I was around 18 or 19 when I took it. I’m 36 now. As far as I can tell, it hasn’t caused any long-term health problems for me. While on Accutane, I got the usual side effects; very dry skin, dry eyes, chapped lips, etc. Nothing that would have troubled me too much.
based on your knowledge, do you think that accutane can cause any kind of long term damage
Yes, it’s possible. As I discussed above, Accutane can cause severe side effects. Fortunately, these are very rare and usually go away once you stop taking the drug. But it’s possible for Accutane to cause long-term side effects.
or premature aging?( there are so many people on the internet speculating that)
Most people who take Accutane get dry skin, but I’m not sure I would call that premature aging. You also have to keep in mind that acne itself can cause long-term scarring and skin damage.
The choice is not between skin damage from Accutane and perfect skin. The choice is between possible skin damage from Accutane and the very real possibility of scarring from acne.
and don’t all medications cause at least some oxidative stress?
No.
have you run into any studies about if accutane inhibits cellular proliferation even after discontinuation of treatment?
The fact that Accutane is a permanent cure for many people is proof that it reduces cellular proliferation even after the treatment ends. One reason people get acne is because the sebum and keratin producing cells proliferate (multiply) too rapidly.
Your question implies that inhibiting cellular proliferation is a bad thing. In some cases it is bad, but there are also cases where you need to inhibit it. Cancer is a good example. Cancer is a form of uncontrolled cell proliferation.
and does accutane really destroy water holding molecules in the body?
Sometimes Accutane fear-mongering goes beyond silly. This is one such example. If this were true, then people taking Accutane would die of dehydration. With millions of prescriptions filled, I think someone would have noticed 🙂
Conclusion
The ability to make an informed decisions requires access to all the pertinent facts. The crunchy holistic health folk would have you believe that taking by Accutane you are poisoning yourself. This is nothing short of blatant fear-mongering and distortion of facts.
Accutane is a powerful drug and nearly everyone who takes it experiences some side effects. For the vast majority these amount to nothing more than dry skin and chapped lips. But there are unlucky few, and we are talking about 1 in 1,000 to 1 in 10,000, who experience something worse. However, even most of the severe side effects resolve once the drug is stopped. The really few unlucky ones can suffer severe, permanent damage from Accutane.
All medication means balancing risks against benefits, and you have to decide if the benefits of Accutane are worth taking the risks.
A well written article and much to consider. However if anyone is considering taking Accutane I would urge them to try something else. My son used it at 16 and then a short second round at 17 and has developed many many side effects. He is now 22 and diagnosed with IBS and fibromyalgia. Would those have happened without the Accutane ? We don’t know for sure, but we don’t think so. And we wish we didn’t even have to wonder. It was not worth the untold doctors, tests, and pain he had gone through!
Thanks for sharing your family’s experience with Accutane, and I’m sorry to hear about your son. It’s impossible to say whether those would have happened without Accutane. Research suggests that there’s a link between acne and gut problems. While not diagnosed, I’m pretty sure I also have IBS (luckily fairly mild). Anyway, even if research doesn’t support the link between Accutane and some health problems, we are all different and it’s impossible to say how any one individuals reacts to a powerful drug like Accutane.
I agree with you that one should be careful with it, and I would consider it as the absolute last option.
I hope your son gets better, or at least learns to live with the problems.
Hi Seppo,
That’s a nice eyes-opening article. I was wondering from your own experience, whether the oiliness of the skin has decreased permanently after the treatment? And did the oiliness of the scalp has decreased too?
Many thanks,
Renata
I can’t really say. My skin is quite oily now, but that could be because of the hot and humid climate of Thailand. Ambient conditions can have a big impact on how much oil skin produces. It’s so long since I’ve been in a cooler climate that I can’t say how my skin would react there.
Wow this was a good unbiased article and good on you for providing that link to the “cyberchondria” article! I too, have taken accutane but since I didn’t take it until I was like 27 I have a different perspective on it than a lot of its crybaby users. I had inflammatory acne all through my 20’s and it just got progressively worse and worse no matter what kind of dietary and skincare changes I made (and I tried it all!). Yes, certain foods like sugar and dairy can worsen my acne but guess what? Accutane has nothing to do with that and knowing my dietary habits worsened my acne did NOT solve the problem for me! None of that knowledge made a difference until I was able to get clear with accutane.
I was so afraid of accutane that I waited until I was suffering so much to finally take the plunge and take it–and then when I did finally take it I made myself so scared of it with my internet research that I only agreed to take it low dose and actually stopped after only 3 months the first time (I got myself so worked up about it that I bailed out of it).
It makes me so sad now when I think of all that suffering I went through bc when I took it for reals (like a full course at a full dose) half a year later it worked like a charm and I suffered no ill effects! Don’t believe the hype people! Apparently, if you have a life and aren’t sitting around obsessing about your skin and meds all you will suffer from accutane is dehydration and dry lips–and flushing (tons of flushing). I used moisturizer and my skin did not even flake (clear as a bell the entire time too). It might not be a cure but it allows you to basically hit the reset button so you can get it under control.
Btw my skin is still oily and I still break out but I’ve learned to stay away from prescription meds bc when I tried to go back to retin a what do you know I started to break out just like before! Cleansing with Hibiclens and toning with Epsom salt of all things keeps it under control.
Thanks for sharing your experience, Ronnie. The net is so saturated with Accutane fear-mongering that it’s easy to forget nothing bad happens to most people who take the drug. Google search gives you the impression that just about everyone who takes the drug suffers some horrible side effects. Science shows this is clearly not the case.
Let’s hope this post and your comment gives some balance to the discussion. Though, I’m afraid this post will just drown in the sea of nonsense in Google results.
Hi Seppo, thanks for writing such a thorough answer, it was very helpful. After going through several courses of antibiotics and topical treatments, i spent a couple of years trying to heal my acne naturally, mainly through diet choices and i just wasn’t getting any results, couldn’t put all the pieces together on my own despite all the effort, and dermatologists couldn’t give any helpful information on the effects of diet on acne, so then i finally went on accutane, but my acne returned 6 months after discontinuation of the drug. It actually made things a bit worse for me, because now i have both very dry skin and acne. Overall i feel like my skin is very different now than before taking accutane, especially the skin under my eyes , i’ve developed some fine lines although although i’m only 20, that’s why i asked about the premature aging and if you knew anything about it.
Also the studies about accutane causing oxidative damage to DNA worry me, for example this one https://www.ncbi.nlm.nih.gov/pubmed/16232082 and the two studies you posted about. it’s hard to say how extensive the damage is though, and if it is repaired over time. but from what i’ve understood, oxidative damage to DNA is what causes aging and age related illnesses, and this is why antioxidants are good for you, although a certain level of oxidative stress is necessary, and it is a part of the immune response, and oxidative stress is necessary for example in the body’s fight against cancerous cells. it seems like a very complicated matter so i actually asked a very good doctor about this matter, and what i got out of his explanation was that since i’m still so young, my body repairs oxidative damage fast and effectively, and his general opinion was that accutane is safe. he also explained to me that it is very common that a drug’s complete mechanism of action is not known, and it doesn’t mean the drug is dangerous.
I wonder if you ever ran into this guys website https://www.aquatic-ape-diet.com/blog/hoffmann-la-roche’s-cover-up-of-accutane/ , I was wondering what you would make of his claims. he presents an opinion that based on what he’s read, he has discovered the mechanism of action of accutane, he claims it causes telomere shortening and is a lethal scam by the reedy drug companies.
OK, this makes more sense. When you put it like that I agree that it’s possible for Accutane to cause premature aging. The oil the skin produces retains moisture and protects the skin. So drastically reducing the amount of oil on the skin can have a negative effect.
A good skincare routine should be able to minimize and to some degree reverse the harm from Accutane. I would recommend some antioxidant moisturizer twice a day and a retinol cream in the evenings. Retinol reduces the signs of aging, like fine lines, and antioxidant moisturizer rebuilds and protects the skin barrier.
Repairing the skin barrier should help with acne also. Bad skin barrier allows stuff that shouldn’t get to the skin get in. This can make you more acne prone.
I don’t know what to make of the studies showing DNA damage. On the face of it, it sounds worrying. But we are exposed to DNA damage every single minute and the body has a good way to repair the damage. Though sometimes the process doesn’t work as well as it should and this can lead to cancer.
There’s pretty good safety data for Accutane already. I mean it has been used for several decades already and I’ve never seen any research that would show it causes significant harm (other than in rare cases). That said, I don’t know how many large and really long-term studies have been done. There’s always the possibility that the scientists just haven’t asked the right questions and thus have missed something.
That’s the narrative media and alt-med proponents push. That oxidative stress is damage in the body and limiting that damage with antioxidants can prevent disease and slow down aging.
Unfortunately, I don’t think it’s that simple. While antioxidants seems like a plausible treatment for many health problems, many of the human studies have been negative (that is, antioxidants don’t work).
I don’t think we yet completely understand the dynamics of oxidation and antioxidants in the body. Science-Based Medicine blog has a few good articles on this. I recommend you check out these:
https://www.sciencebasedmedicine.org/antioxidant-hype-and-reality/
https://www.sciencebasedmedicine.org/are-berries-the-new-snake-oil/
https://www.sciencebasedmedicine.org/inflammation-both-friend-and-foe/
Sorry, too long, didn’t read. I did scan it through and seems like many of the points were linked to Accutane litigation and made by lawyers. It’s true that Roche has paid untold millions to Accutane victims, but this doesn’t necessarily mean Accutane really caused that damage. Science is not settled in courtrooms.
I find it very hard to believe that an individual blogger, with apparently no scientific training, would have discovered a mechanism of action that’s missed by scientists actually doing the research. It’s not impossible but I find it extremely hard to believe.
Alties and natural health proponents like to always bring up the big pharma conspiracy. That we are somehow murdered or poisoned by the drug companies. That argument is just beyond silly to me. There’s plenty of research that’s done independent of the drug companies.
The big pharma conspiracy argument assumes that all the scientists with no real connection to drug companies would either be too stupid to notice this conspiracy or would go along with it (with no real benefit to themselves). Yet, somehow these scientifically illiterate natural health gurus have uncovered this conspiracy.
I’m not claiming that drug companies are saints or act in the interest of humanity. They are driven by profits and it’s well known they do shady things to improve profits. The same could be said of many other industries.
In reality the big pharma argument is just a logical fallacy known as poisoning the well. It’s pure intellectual laziness. It gives the alties an excuse to ignore science (that contradicts what they have already decided to be true) because science is corrupted by drug companies.
I’ll definitely try an antioxidant cream for the dryness, I actually found an organic moisturizer that has both green tea and resveratrol in it, so this might be good for the acne too. the retinol might not be an option for me since my skin is also very sensitive and maybe not be necessary either, although my skin is quite dry now, many of my friends who are the same age as me have skin naturally as dry as me. but oily skin definitely would have had its pros, without the acne of course. but on the other hand, I’ve seen many people who have taken accutane decades ago and do not seem to have aged faster, despite the dryness and skin sensitivity. Salma Hayek most famously, has talked about having severe acne and taking accutane in her twenties, and she is probably the youngest looking 47 year old I’ve seen. (and says she is against skin fillers and plastic surgery). Also the people I’ve met who have taken accutane don’t seem prematurely aged and none of them have been hurt by accutane. i even know doctors who themselves have taken several courses of accutane.
but alone the fact that accutane has been used for decades isn’t a safety guarantee really, many substances used for long periods of time are later found harmful, but like you said earlier , medicine is always risks vs. benefits.
And well, life isn’t safe, no matter how much we want it to be so. But I feel that fear is a whole different concept for this generation, we are in an immense pool of information, and it creates a base for fear, since we are always afraid of what we do not know, and most of us don’t have the tools to make adequate conclusions from all these things we read on the internet, more or less scientific, it leaves us baffled. at least i feel helpless in the middle of it, information everywhere, knowledge in very few places.
but i want to thank you, i’m finding this site very helpful and supportive in this matter (acne and all worries related to it), and it shows through that you want to help people.
Very good points, thanks for sharing this!
True, but this wasn’t my point. What I wanted to say is that doctors and scientists recognize Accutane as potentially dangerous but also potentially very helpful. So a lot of time and resources have been spent on understanding and improving the safety of the drug. And since the drug has been in use for several decades we have a lot of short and long term safety data available. But it’s certainly possible the studies have missed some effects.
If you feel you are overwhelmed with all the information out there, I suggest you take some time to learn critical thinking and skepticsm. It’s been perhaps the most helpful thing for me. It’s very unnatural for humans since it seems out brains are wired into jumping into conclusions and trusting unreliable information. Learning even the basics of critical thinking helps a lot in making sense of the world.
This video is a nice introduction into skepticisms and why it’s important:
The Demon Haunted World by Carl Sagan is perhaps the best book to get started with. It’s ridiculously good and entertaining.
I can also recommend searching for James Randi’s videos over at YouTube. They contain many excellent deconstructions of pseudoscience. The Skeptic Magazine YouTube Channel also has plenty of excellent videos.
Finally, if you are into podcasting and audio content, I can’t recommend The Skeptic’s Guide To The Universe enough. They also cover a lot of science news, so I’m not sure if you are interested of that, but it’s worth to listen to a few episodes to see if you like it.
Skeptoid is another good podcast. Sometimes Brian comes off as somewhat dogmatic, but you can learn a lot from listening to the process he goes through to reach his conclusions. I recommend going through the episode guide and listen to the ones you find interesting. They are all about 10 minutes, so it doesn’t take too long.
Hi there! I just wanted to add in my story about Accutane. I started Accutane 30 years ago when, at 16 with terrible out of control cystic acne, nothing else worked and we heard about this Wonder Drug! It did eventually help get rid of my acne, but not before I was already terrible scarred on my face and back. As a young girl going through this in my teens I was left with a very bad self-esteem problem throughout my life due to the scars. I have had dermabrasion, twice, and laser therapy done to minimize the scarring, but it is still there and I always feel so ugly and self-conscious. Even at 46 years old I do not wear backless dresses because of the scarring! I had to go back on Accutaine at age 26 when I started developing cysts on my back. Fortunately I was able to convince my doctor to put me right on to Accutane instead of trying all of the other medications and having the cystic acne get out of control again. It worked like a charm! Other than my normal oily skin and occasional break-outs I do not get the cystic acne anymore…..plus side, very few wrinkles! I always have people comment that I look much younger than I am. Bonus!
My daughter made it through her teen years with ‘normal acne’. We were able to control it with anti-biotics. My son on the other hand is having a terrible time. He has been on Accutane for two months. He has the cystic acne I fought as a teenager. Unfortunately we have had to take him off the Accutane because it turns out he has developed an allergy to it. Crazy! He started on the medication slowly but his face broke out terribly with the cysts. He also developed large painful cysts on his back, chest, shoulders and hips. His face swelled up after two months and he looked like a chipmunk! We took him off the Accutane and onto steroids to help with the swelling. One and a half weeks later he started back with the Accutane and woke up with his face COMPLETELY swollen and a rash over his body. I took him to the doctor, after making him go to school that way (I know, I’m a tough mom!) and they were shocked to see his condition.
I’ve been doing research and have yet to see an allergic reaction develop to Accutane. I did find that some people can become allergic to parabens which are actually in the capsules holding the medication.
The doctor is unable to put him on amoxicillin because we found out he is allergic to that. Side note – the doctor put him on amoxicillin prior to Accutane and he developed a rash ten days after starting the med.
The doctor was going to put him on minocycline put we realized his nails are blue! I guess that is a side effect we did not know about until now!
This poor kid has gone through so much. His face is full of huge painful cysts. As well as his other body parts I mentioned before. He is a young tall healthy athletic boy.
I will try the green tea for him but it is disappointing for us that the Accutane did not work.
Sorry to hear that your son has had to go through so much because or acne. Paraben allergy seems like a possible explanation. From what I read paraben seems to be mildly allergenic. Topically applied it can causes weak allergic reactions to sensitive people. In rare cases it apparently can cause systemic allergic reactions, something your son may be suffering from.
If it’s indeed due to paraben allergy, then he has to be careful with what he’s eating. According to this article parabens are also found in food items. See the ‘Table 2’, you have to scroll down a bit to find a link to it (I think paragraph 7).
There’s not much I can say to this, other than to work with your doctor to figure out what caused the allergic reaction to Accutane.
Whoever wrote this article is totally clueless about the longterm damage related to accutane.I am a physician and got in the trap of trying accutane because of my cystic acne.I did not believe that any chronic side effects would occur.I WAS WRONG.During the 2 month therapy i had retinal detachment in my left eye.Now i have a permanent vision loss. Apart from that i have developed the severe longterm side effect of low libido.This side effect started while i was taking the drug and got worse after stopping it.Here is a link:
https://www.ncbi.nlm.nih.gov/pubmed/24902508/
The totally clueless guy wrote this article based on meta-analyses and systemic reviews looking at the safety of Accutane. As I mentioned repeatedly, by all accounts severe side effect are rare – that is, rare, not impossible or never existing.
I’m sorry to hear you suffered permanent damage because of Accutane, you seem to be one of the very few unlucky ones. But you have provided no evidence to support your claim that the severe side effects from Accutane are under diagnosed. The paper you linked to covers 120 cases of severe side effects, but it also covers 3 different drugs and spans over a decade and 20 different countries!
If we are generous and assume that all the cases are due to Accutane (they aren’t, but let’s be generous), then we are talking about less than 12 cases a year – in 20 different countries. That’s less than 1 case per year per country. Compare that to how many people take Accutane every year? Hundred thousand? A million?
I’m sure the paper doesn’t cover all the cases and some are never reported. To me the paper supports what I wrote here; that severe and permanent side effects occur in very rare cases.
You can search all over the internet.There are hundreds of reports of people who suffer from this side effect.This side effect is very under-reported.Dermatologists deny it and don’t report it as they should and patients are responsible also for not reporting this side effect because they fear of being laughed at.The drug company is also responsible for not having stated all the possible side effects in the drug leaflet!
My friend as a physician i also believed in meta-analyses and systemic reviews but now i don’t since i have come to the conclusion that they are done unprofessionally and are unreliable.We don’t even know if in these analyses the questionnaires that were given to the patients included the sexual side effects part.The researchers might also have assumed that erectile dysfunction was due to depression which is a false assumption.Such a serious side effect should at least be stated in the drug leaflet but unfortunately it’s not.My life and the life of others has been literally destroyed by this drug.Many cannot tolerate the many side effects and commit suicide.I personally had contact with a fellow sufferer and later learned that he commited suicide because of the permanent side effects he had.
If you want your site to be really helpful and informative then do state all the possibly permanent side effects that this drug can cause!I am sorry if you got offended but my life and the life of others has changed so much since we took this drug.Isotretinoin is a chemotherapy drug and should be given to people for acne ONLY after they have been informed for all the possible permanent side effects!
here is some links for people who don’t believe they are being treated for acne by a chemotherapy drug:
isotretinoin treatment of thyroid cancer:
https://link.springer.com/article/10.1007/s00259-001-0702-4
https://europepmc.org/abstract/MED/18854619
isotretinoin treatment of cancer of the cervix:
https://jnci.oxfordjournals.org/content/84/4/241.short
isotretinoin therapy of skin cancer:
https://jnci.oxfordjournals.org/content/84/4/235.short
isotretinoin treatment of kidney cancer:
https://jco.ascopubs.org/content/13/8/1950.short
I agree with you that people should be made aware of all the possible side effects. If erectile dysfunction and other sexual problems are grossly under reported then that would be a huge problem. They also wouldn’t show on the meta analysis and systemic review papers I looked at. It doesn’t mean that the meta analysis papers are unprofessionally done or unreliable. It just means there’s a problem with adverse effects tracking for isotretinoin.
I’ll be happy to make corrections to the post if I have some reasonably reliable data to base them on. I can’t write anything based on internet reports since there are no controls in place and it’s impossible to determine prevalence.
I am literally about to start Roaccutane (trading name in Australia) in 3 weeks and I am glad I came across this article. I am a 26 y/o female who has had acne since the age of 12. Throughout the 14 years, the acne has changed in severity, from cystic to non-cystic to blackheads and milia. I have tried all the usual suspects to improve and/or ‘cure’ my acne ie. antibiotics, the pill, topical creams/serums, microdermabrasion, and all these treatments combined! My main concerns revolve around premature aging and decreased libido. Is there any scientific evidence of this drug decreasing female libido? Are there any reported and researched cases about women who have suffered from decreased libido even after ceasing taking the medication?
Thanks again for a great, informative article.
Unfortunately nobody has followed up on how Accutane affects libido or erection after the Mexican study, and that study only involved men. There’s no scientific evidence to show how it affects libido in women. There are lots of anecdotal reports from women who say Accutane caused vaginal dryness and decreased libido.
Accutane DOES cause premature aging. I was 29 when I got my script for Accutane. I knew a classmate age 18 who took Accutane, but she looked 35. I did not make the connection until I started taking Accutane myself. I looked so youthful, but within a few months of taking Accutane, I started to develop jowls and aged facial skin and started looking like my 18-year-old friend who looked 35. I was worried, but I continued the course. I had all manner of side effects. I lost my normal personality and became careless, depressed and aggressive, which lasted until I stopped the course of treatment. Other side effects lasted for years, including severely dry eyes that required ophthalmologic treatment, arthritis of the hands and knees and aged dermis. I finally had to have surgery to correct the aged dermal damage. I was still so young to be having age-related surgery.
15 year old with erectile dysfunction and loss of libido here. Do not take this poison!
Hi,
Great post!
However, I was wondering what your thoughts are on the possibility of brain damage resulting from the use of accutane?
The Huffington Post had an article on the subject, but I’m not sure how credible the claims are:
https://www.huffingtonpost.com/alexander-m-spring/accutane-putting-your-per_b_1314233.html
I haven’t seen any credible evidence that Accutane would cause brain damage or neurological problems. The studies cited in the HuffPo article aren’t particularly convincing. Brain imaging studies don’t mean much, you can read anything from them because the brain is much more complex than this area of the brain does this and that area does that. The other paper was a test tube study. It’s not impossible that Accutane could trigger depression in some people, but so far there’s no convincing data to show that. Also, people with acne often have much more depression than people with clear skin, and it’s not always clear what part is caused by acne and what is caused by Accutane, etc.
Thankyou for the response!
Slightly unrelated, but what are your thoughts on low-dosage accutane over a longer period of time to minimise sides?
https://www.ncbi.nlm.nih.gov/pubmed/24891681
https://www.ncbi.nlm.nih.gov/pubmed/23013115
The above suggests that it may be a good compromise for those worried about the horror stories associated with the standard dosage – do you think this could minimise sides whilst retaining a similar effectiveness to a standard dosage? Or is the lower dosage likely to noticeably decrease its effectiveness?
I talked about low-dose isotretinoin in another post. The short story is that higher doses seem to be no more effective than lower doses. Low doses also cause significantly fewer ‘annoying’ side effect, dry skin, muscle pain, etc. That said, it seems that even people who take low doses can still ‘horror story side effects’ – at least that’s the impression I got from reading the papers on low dose isotretinoin regimens. Perhaps some people just react badly to isotretinoin that even low doses cause serious problems. This is a bit speculative as we don’t have enough data on severe side effects from people taking low doses. The best I can say is that low dose is not guaranteed to eliminate the really severe and debilitating side effects.
Your assessment is quite balanced and will appeal to many. You’ve completely ignored the matter of adolescent bone growth plate closure, aka stunted growth. This is an absolutely real risk of Accutane and it happened to my son in 2013. My wife and put our son on Accutane at 13 for mild acne, as a preventative measure; he is genetically predisposed to severe acne. After six months we noticed zero growth and zero weight gain, unusual for adolescent boys. We stopped the Accutane and started a six month assessment: xrays, pediatric and endocrinology research by the best MDS in Northern California. They affirmed our fears. Growth plates totally fused at age 13 and no other medical explanation but accutane. A massive overdose of vitamin A. Our son can expect to be 65 inches tall and around 125 lbs for the rest of his life. I’m happy to share the evidence with anyone interested.
We confronted the dermatologist who specifically told us this was not a significant risk. She hastily did a thorough literature search and found that growth plate closure is reported in about 3% of adolescent patients. I believe that number may reflect significant underreporting. My strong advice to parents: Consider carefully the consequences of arrested growth as a result of accutane: THE POSSIBILITY IS VERY REAL!
Hi Grek,
Thanks for posting this and I’m so sorry to hear that happened to your son. None of the reviews I read mentioned this. I looked and found a handful of case reports that talked about this. In all but 1 cases it happened after a long duration (several years) of high dose treatment. If you have any evidence to show this is more common, please let me know and I’ll update the article.
Hello,
Well thought-out article! It is good to see someone who isn’t necessarily anti-Accutane lend credence to the plausibility of certain side effects. Few who suffer after Isotretnoin want to admit the majority aren’t severely harmed by the drug, and few who have success with the drug want to admit those horror stories might have been due to the drug.
I’m yet another unfortunate one who has been stuck with erectile dysfunction since a few weeks after starting Accutane. It’s been over a decade now. All arguments about causation aside, sexual dysfunction ruins a young person’s life and 1/1,000 multiplied by ~20 million prescriptions for Isotretinoin is far too many.
I would also like to point out that there is a conflict of interest clause attached to the Dr. Marius Rademaker study which is cited in the article. Apparently Roche and several other manufacturers of Isotretinoin have bankrolled his studies and appearances at dermatological conventions over the years.
All the best.
Thanks for posting this!
As one of the “unlucky few” who have had their lives somewhat derailed by this drug, I appreciated reading your reasonable, clear-headed article. Severe acne can certainly impair one’s quality of life, and it’s clear that most people who take Accutane end up with clear skin and without any permanent side effects. However, if you’re very unfortunate you may end up with a puzzling, post-Accutane syndrome and a number of untreatable, seemingly permanent mental and physical side effects. Admittedly, it’s all kind of bizarre and hard to believe, unless you have the misfortune to experience it first-hand.
I took it over ten years ago as a teenager and acquired the symptoms people complain about. In my case, I consider the cognitive and emotional side effects (such as a sort of constant brain fog, inability to concentrate, and anhedonia) the most debilitating, and if only these were remedied I think I would almost be happy, despite the complete sexual dysfunction. Although when wondering if this is all in my head, the latter serves as a clear reminder that I was in fact physically damaged. Admittedly, it’s all quite bizarre and hard to believe, unless you have the misfortune to experience it yourself. I don’t care about making Roche pay at this point, I just wish there was some way to reverse this, or at least to understand what exactly the drug did to me and others who developed these symptoms.
I’m sorry to hear that John. I can only imagine what that has done to your life.
After my doctor increased my dose of accutane I developed nearly every side effect listed and they haven’t gone away 5 years after stopping taking the drug. I have been diagnosed with fibromyalgia and live every day with pain and fatigue. I strongly believe the drug has caused this. Before taking it I was fit, strong and healthy, now I feel like I’m 80 years old. I’m now 33.
Thank you for taking the time to write such a thoughtful, rational article on the subject. I took Accutane at age 19 in 2005-6, and it absolutely triggered depression for me. My derm had me do the requisite 7 or so months, then one month of no drug,then one more month to give it “one final push”. I wasn’t expecting this, but my mood improved SO much during the one drug-free month, then took a horrible turn during the last month back on it. I have struggled with depression on and off since then, though I don’t necessarily blame Accutane.
I also was later diagnosed with IBS-C around 2009. Your point about the brain-gut connection makes so much sense. I also think there is a sensitivity involved with acne-prone people; if we are more prone to skin disruption, we are likely prone to other areas of the body being disrupted as well, no?
Thanks for sharing your experience, Allison.
There have been some papers that have linked the skin, the gut and the brain. It’s far from proven, but it’s possible that acne and depression are both linked to inflammation originating from the gut.
Such a well rounded & written article. I also took roaccutane. 20 years ago, I was 18 and had bad cystic acne. I remember thinking this drug was amazing, it could fix everything. And, until I read your article today and a few others previously, I had no idea what the long term side effects were. Now I know, and having just had a massive operation on my bowel, think since so many of us have had bowel problems, is that just a coincidence? I had such bad symptoms that were also related to severe endometriosis that was only discovered this year. Is that also a coincidence? I have no idea, but the bowel issue I now know could be related. When they operated, the surgeons said it’s the worst case they’ve seen in a few years. I had been putting up with these horrible ibs symptoms for a very long time, and now I’m on the mend, however I have a bad feeling this was not the path I was meant to be on. If I hadn’t have taken those drugs 20 years ago, would I have had these issues now? Anyway, thanks for the interesting read, and perspective. It’s made me think twice about blaming the manufacturer.
Thanks for sharing your experience, Leah. It’s impossible to say what’s the case for any individual, but most of the studies show that Accutane doesn’t cause gut problems. People with acne are more prone to gut problems (I know my acne is linked to gut issues), and that probably explains why many people who take Accutane also come up with gut problems later. Overuse of antibiotics in acne is probably one reason why so many with acne have gut issues.
My two sons have taken accutane as teens, and I took it as an adult. Now, years later, I have autoimmune arthritis, one son has ulcerative colitis, and my other son suffers from anxiety and temper problems. My daughter and husband who did not take this drug have no health problems. All of us were fine previously, and no autoimmune disease runs in our families. My 85 year old mother has less pain than I have. These issues are known side effects of accutane, though there is still denial of the extent of the damage from this medication. I would strongly advise that no one take this drug. You might get lucky and skate through with minimal side effects, or you might think you got lucky and years later develop serious debilitating illness. Not worth the risk.
I find that when I am super strict with my diet (low carbs, low sugar) my skin looks really good but if was to have a sweet my skin breaks out. For example one day last week I had a cookie and then the next day I had another cookie. A few days later I developed a few pimples on my face. My question if I was to be on accutane will I still have to be so strict on my diet.
My boyfriend took accutane in 2009 since then he experiences the following; he can’t gain weight, he is fatigue all the time, and our biggest issue is whenever we have sex it’s like he is out of it for a couple of days untill better. He says it’s almost as if he has a head cold where you can almost feel it between your eyes. He says it’s almost as if he loses sight in his eyes like a fog comes over them which leads to a headache. He says since Accutane he hasn’t been right as far as his body. We’ve told his family doctor about it and noone no-one can seem to help us. Can someone please help us?
Hi,
I am 36, Female suffering with acne (chin and jawline.) I am considering taking isotretinoin but wanted to know if you can shed some light on these parameters-
1. FDA guides the waiting period for planning pregnancy to be 1 month. I have been told a waiting period of 2 months is enough post stopping isotretinoin to get it out of your system if you plan to conceive by my dermatologist- is it true?
2. If you have waited the necessary time frame – will that result in safe pregnancy and avoidance of miscarriage?
3.I have been asked to take lower dose of 20mg per day for one month as I do not have cystic acne anymore. I just get pustules/ black-white heads mostly but do have PIH. Does isotretinoin help in clearing PIH?
Would appreciate if you can shed some light on this.
Thanks,
P
Sorry but I can’t answer the questions 1 and 2. Your doctor is in a much better position to advice you. As to 3, I don’t know. I haven’t seen any studies looking at isotretinoin for PIH. It sounds a bit doubtful as isotretinoin mostly affects the sebaceous glands in the skin. I doubt it helps with PIH. In PIH, the damage to the skin has already happened and the only way to speed up the healing process is to speed up regeneration of the skin either with topicals or cosmetic procedures.
The sexual side effects are very real. It is under reported because it is such a sensitive issue and because some of these young men have not fully comprehended what has happened to them – they often don’t associate their side effects with accutane until many years later.
These young people have no one to turn to. GP’s don’t believe then and
I have yet to hear about any specialist who says they can help.
There is no cure for reduced libido and and ED caused by accutane.
Like PFS these side effects are most likely permanent! Who in the medical world cares? No research is even been done, no follow ups and no support for these kids.
Accutane will take many more lives – who is going to stop this happening?
Sebbo,
Well written article. It is quite true that as humans we look for order and/or parallels in life to explain its nuances. Nevertheless, I feel your missing one key component in your article. That is, why and what was Accutane created for?
I know that Accutane was first developed as a chemotherapy drug. But I don’t see how that information is relevant to whether it’s safe for acne or not. You can also use vitamin C and coffee to develop films, but that information doesn’t say anything about how safe they are.
Whether it was developed as a nutritional supplement for pigs or a drug against skin cancer is irrelevant. What matters is how safe it is as currently prescribed for acne, which is what I’ve covered here. Safety is always a matter of dosage. Something that’s safe and therapeutic in small doses could be cancer treating in larger doses and lethal in even larger doses.
Of course, if your intention is to scare people away from Accutane, it’s nice to use shocking facts – like it was initially developed as a chemotherapy drug.
Hello ladies and gentlemen,
It was only yesterday that I made the connection between ten years of sexual dysfunction and taking accutane. I was prescribed accutane at 14 years old for my moderate acne. It cleared up my skin but stole my sex drive. I can honestly say, I no longer have a libido or sexual desire, and I can only link this to accutane use as I have never been on other prescription meds and had normal sex drive prior to usage. Otherwise I am a healthy, athletic male, who has experimented with high levels of testosterone as well as other drugs but to no avail. My sex drive remains at zero. Words cannot express the regret and deep sadness I feel, when I reflect on the fact that I may have potentially lost one of the most important things in life which will and probably has affected countless relationships, my personality, my susceptibility to depression and the fun/excitement I have missed out on, in exchange for an acne-free face. This is beyond words. There is no justice here, and I doubt there is going to be a happy end to this story.
I have seen many people proposing reasons as to why accutane affects libido. I have a theory which I have not seen anyone put forward yet. However it seems to account for a lot of the reasons changing hormonal levels etc. has had little effect on libido. To look at the effect of a drug on sex drive we must ultimately look at the brain, as this is the place all libido and sexual desire is derived from. Hormones alone don’t give you, your libido, hormones stimulate neuronal activity in specific areas of the brain, it is this activity which gives you a libido.
Bremner et al, is one of the only studies which looked into functional brain imaging of patients treated with accutane (Isotretinoin) (1).This study revealed that Isotretinoin specifically altered the activity and metabolism of a brain region called the orbitofrontal cortex in those who took Isotretinoin versus controls. Unfortunately, brain images were not taken after treatment was discontinued, so we cannot say whether these effects were reversed once treatment was removed or whether they persisted. I have contacted an author of the study for more information. Given the possibility that Isotretinoin can cause epigenetic changes, it is possible that these changes are maintained after treatment.
Now, interestingly one of the only studies which has been conducted on brain activity in hypoactive sexual desire disorder in males, which is essentially sexual dysfunction. Showed that, the major difference in response to sexual stimuli, in males with sexual dysfunction and normal males was a difference in the activity of the orbitofrontal cortex (2). As such, it appears the orbitofrontal cortex plays a key role in sexual desire, and it appears that Isotretinoin specifically alters activity of this brain region.
Given this, it seems highly plausible to me that this could be the culprit we have been looking for. However what is really needed now, is to see whether those changes in the orbitofrontal cortex remained after treatment had been stopped. As it is also quite possible that these changes were only temporary. If these changes in orbitofrontal activity/metabolism were reversed after a period of stopping treatment, then my theory is incorrect.
Unfortunately, this puts us fellow sufferers in a slight predicament. The orbitofrontal cortex is not a very well studied part of the brain. If it has been changed in a fundamental way, possible treatments will be difficult to come by. This will sound extreme, but I can only propose deep brain stimulation as a viable and potential treatment. This is a medical technology which is progressing at a rapid rate. It has recently been used for Anorexia, and so I can see someone easily making the case to use this for a debilitating issue such as sexual dysfunction. Interestingly, a deep brain stimulation protocol for the orbitofrontal cortex has already been developed by Scientists out of Oxford University. One was implanted into a woman with low sex drive, which markedly improved her sex drive. According to this article (3). However I cannot actually find the original paper, in which the woman had the device implanted. If someone could post it, that would be great.
I am sorry this is such a long post, but I wanted it to be conclusive and offer some hope, in a seemingly hopeless situation. I can only ask that we all investigate this further, but what is more important, is that we email and message researchers and neurosurgeons raising the topic of brain imaging studies and deep brain stimulation for sexual dysfunction. If we remain on forums and message boards, nothing will be done. Nobody will bother researching conditions which they don’t know exist or see no clinical benefit in treating.
Sexual dysfunction in many ways is a far greater and more debilitating ailment than anorexia or many illnesses. It strikes us in a very personal way, and in a way that most people would never be able to appreciate or understand. Additionally, this may also be the mechanism by which other drugs such as Finasteride work.
Feel free to message me, also send over email address with your symptoms /info. We need to start to amass patient with these problems if we are to have any kind of case or chance of making this a legitimate topic of research/concern.
Also if anyone has had any success with Bremelanotide / PT-141, please let me know.
My email is nine_livez@outlook.com
Much Love,
Nine livez
Hello
I have always had acne my entire life. I am 35 now. When i was 27 (June – Dec 2009) i took accutane strongest dosage for 6 months and my acne cleared just for a few months but the side effects were bad. I had a follow up treatment around 2010 for three months to help clear the breakdown i had. The skin cleared for a short wile because i started having breakouts shortly after treatment. I told myself it is not working. Fast forward to 2013 May, i went back to accutane this time it was three months treatment but quit half way through the treatment as i was tired of the side effects. Two months after quiting, i developed some crazy migraines. An MRI in November 2014 revealed that there was white matter hyperintensities (WMH) lesions on T2/FLAIR brain. A scan in late 2016 showed more significant patches as opposed to the first one. Could this be a result of takin accutane pills as it was revealed that this conditions normally happens to very old people.
I would totally disagree with people’s sentiments that this article is unbiased, it seems heavily biased towards the use of the drug. Are you on the Roche payroll Seppo?
There is no ‘fear mongering’ on the internet regarding this drug, but there are people who’s lives have been ruined by it, and they’re simply trying to warn people of it’s, more common than reported, long term effects.
I took it for four months, back in 2009, 80mg a day. I suffered all the usual side effects while on it, and was told, ‘stick with it, it’ll be worth it’.
Well, let me tell you, it was not worth it, at all.
It left me with Chronic Fatigue, IBS, gallbladder pain, joint pain, muscle weakness, worse skin problems, low sex drive, anxiety, depression, insomnia, brain fog, and numerous food sensitivities.
I am a member of two different Facebook groups for people who are desperately trying to cope with the long term damage this drug causes. Many of the members message me privately, as I have found ways to manage my symptoms. Their complaints range from chronic constipation, to suicidal ideation.
Consider this when you read something negative about Accutane….What motivates someone to try to influence people not to use a certain drug, other than trying to protect others? There is no other reason to speak out against it. Now consider the reasons for promoting it’s use, or suggesting people should give it a try, they are purely financial.
The drug companies producing this poison are putting the health of desperate young people at risk. It’s not enough to simply say, ‘well, you were warned’. These people will ignore the risks, because they are that desperate for an easy way to clear their skin.
Diet and lifestyle modification is the only way to go when treating acne, ditching gluten, dairy, and sugar, eating more fresh vegetables, improving digestion, bowel frequency, and balancing hormones.
The health problems this drug left me with require constant management, it has turned my life upside-down. I am 37, and sleep alone every night, because I’m not well enough to maintain a ‘healthy’ relationship. I have become a lonely, sick, recluse, but I will never give up hope of returning to health at some point.
Well said Tom, I agree and share similar experiences.
We appreciate your rationale discussions of Isotretinoin and other topics. We’ve had difficulty finding a dermatologist who will talk with us about the pros\cons\& research on Isotretinoin and other acne medications. This is disappointing as we are simply trying to gather the information needed for truly informed consent before having such medications prescribed for our child. So we’d like to ask if you are you familiar with research looking at possible epigenetic effects of Isotretinoin, as well as apoptosic and other cellular effects.
There’s many articles out there, but here are a couple of examples of what we’ve been reading:
Dermatoendocrinol. 2009 May-Jun; 1(3): 177–187. PMCID: PMC2835911
Temporal changes in gene expression in the skin of patients treated
with isotretinoin provide insight into its mechanism of action
Amanda M Nelson, Wei Zhao, Kathryn L Gilliland, Andrea L Zaenglein, Wenlei Liu, and Diane M Thiboutot
Apoptosis May Explain the Pharmacological Mode of Action and
Adverse Effects of Isotretinoin, Including Teratogenicity. Acta Derm Venereol. 2017 Feb 8;97(2):173-181. doi: 10.2340/00015555-2535.
Doxycycline, metronidazole and isotretinoin: Do
they modify microRNA/mRNA expression profiles
and function in murine T-cells?
Scientific Reports 6, Article number: 37082 (2016)
doi:10.1038/srep37082
thanks
Hi Maria!
Sorry for my late reply. I haven’t had a lot of time for the site lately. I looked over the studies you mentioned. They are such preliminary studies that it’s difficult to know what to make of them. It’s obvious that isotretinoin causes many changes in the body, and that it significantly affects cell growth in certain areas. What are the real health effects of these, nobody can yet say.
But it’s clear that isotretinoin causes significant, and in some cases permanent, side effects to a small percentage of people taking it. We don’t really need epigenetic studies to know that. Epidemiological studies show these severe side effects are very rare. To my mind, that’s all you need to know for informed consent. Unfortunately, doctors often dismiss these more severe side effects and may not do a good job of educating patients about them.
This is crazy, I just found this site 33 years after taking accutane. I’ve had anxiety, ED, and itchy dry eyes, and nose since I was in my 20’s – now I know why.
Thanks for posting and commenting here. I took one pill and decided to do a thorough research on this drug. Now the rest of the pills are going to the rubbish bin. I am more than convinced Accutane is causing permanent damage to your body, either its erectile dysfunction or something else. It is not a coincidence. Just not worth the risk ruining my entire life. Hopefully one pill is not enough to make any changes to the body
This drug is a crime against humanity, and all these so called studies are botched, biased and corrupt.
This drug ruined the lives of tens of thousands of people forever, amd will continue to do so. It is probably the most dangerous drug that exists on the market these days, and it used to treat acne – over 80% of the prescriptions go to people with mild to moderate acne, and doctors completely fail to inform patients how devastating this drug really is.
Anyone promoting its usage will be remembered on the wrong side of history when the truth about this poison is revealed to the public.
I started Clavaris 10mg, then up to 30 and then up to 60mg. I went in knowing the side effects and all that. I had used Accutane when I was younger and it cleared up my very bad face acne very good. Fast forward, I am 44 and started to get worsening back and chest acne. I was on 10mg for two months because the guy didnt want me to break out too fast. Things were fine , just bad lips and dry skin, nothing I couldn’t handle. Two months later he bumped me to 30mg, I did well for a month. So next visit he bumped me to 60mg. My skin was looking amazing, body acne better but not gone, my face looked flawless. Now comes the trouble. Two weeks into 60mg I felt this fatigued I have never had in my life. I didnt do anything and it felt like I ran a marathon. I dont know what a 95 year old man feels like, but you get the drift. It was so scary I felt scared and almost went to the ER. I called them they dropped me to 30mg. The feeling for the most part went away. It was during the 30mg after this that my Bowels started being funny. My bowels weren’t always the best but I was getting severely constipated, had to go, couldn’t go, etc. I was at work for a week dealing with this and started to get anxiety. I went in to see the Dermatologist and he said, “its not the drug, its you, see someone in GI.” He also blew off my experience with the fatigue and was like moving on. I quit it for two weeks (as I am writing this) and my bowels are much better and dont have that feeling anymore. He wants me to see a GI guy before I try this, if I even want too again. My last visit, I told him “Dont ever tell me, nor anyone that basically the drug isnt causing this when its my body and I know the changes that happen. And when I stop it goes away.” You DONT make that up. Anyways, its a wonderful medicine for acne and I feel lousy right now. However, you would be STUPID to think that lots of the online stories and the fact that the makers got sued was by accident. I did my own research after the fact and I remember seeing that the study that confirmed it had nothing to do with IBS and some others was, you guessed it, by the Academy of Dermatology! Meanwhile I believe some original reports were from Chapel Hill. No red flag there. This medicine is serious man, on the label its other use is Leukemia.