Accutane Long Term Side Effects (Top voted first)

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I have a son that took accutane 60 mg a day for six months in a row three years ago. Now after many trips to doctors over strange medical problems, it seems accuatne is the culprit medication that has caused servere joint and muscle pain, severe dry lips, redness in face, eye infections of own immune system attacking itself, systems of osteoarthritis in both shoulders, both wrist and right hand, blood in stool, possible hair loss, abnormal liver function test results in AST and ALT. My son went from being a high school football and track athlete while taking this medication three years ago to someone that is in constant pain just washing a car. After I have researched this drug extensively, I can't believe that the FDA allows this drug originally made for cancer patients to be marketed for teenagers with acne. All one has to do is look online what vitamin A overdose does to someone and then you have the results of what this medication has done to my son. This drug needs to be taken off them market ASAP and the drug companies that make it need to compensate all teenagers that they have possible ruined their future. Shame on them! What is going on here?

1933 Replies (97 Pages)

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7

My brother, his 2 twin friends, a friend of mine, and myself all took Accutane once for 6 months, and all of us are doing great. My brother and his 2 friends took it about 4 years ago, and my friend and I were on it 10 years ago. None of us have suffered from any side effects or conditions.

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5

Im supposed to start taking accutance in 2 weeks..i know 5 people who have been on it and are fine..but it hasnt been years later..now im starting to think if im making the biggest mistake of my life..

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10

I was going to start accutane next week. After reading these posts, I have decided against it. My thanks (and sympathy) go out to all who have shared their stories!!

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2

I took Accutane when i was 15 yrs old...I had my first back surgery when I was 20...my second when I was 23..niether of these surgeries was caused by a specific accident I just woke up one day and got out of bed and my back gave out....I also have very bad stomach problems I take 40mg of nexium and 300mg of zantac daily or my indigestion gets so bad I can't stand it...I have been scooped from both ends and lots of blood tests and the doctors cannot explain stomach at all...I'm not sure if this is a side effect or not...Is anyone else out there having stomach problems due to accutane? I'm in constant pain in all my joints especially my back, shoulders and wrists. I am now 33 and take about 1600mg of motrin just to get thru the pain of everyday life.

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9

I was put on Accutane when I was 25 and had my final dose in 2008. A year later and I'm experiencing problems and symptoms I never have before. Like Dennis, I have severe stomach problems including cramping, bloating, pain, etc, and earlier this year I was diagnosed with IBS by a gastroenterologist.

I don't have joint pains fortunately, but I suffer from insomnia and drastic mood swings. I constantly lack energy and my concentration has completely gone off the boil.

The acne cleared up, but I have permanent red marks all over my arms and back that were never there before. I was told oh, those are fine, they'll clear up eventually, but one year later they are as prominent as they were before. I have rashes along my forearms. Additionally, my face is always dry, I become very flushed and sunburnt easily, and I developed scarring toward the end of treatment when the acne was supposed to be clearing up.

The worst thing is I told my dermatologist all of this, but was informed that those aren't his area of expertise and I should see another specialist about those problems. He knew the drug was causing these illnesses but he shunted me off onto other practitioners once he got his fee. Essentially, he didn't give a s***.

I would caution anybody about to go onto accutane or any of its variants to research and assess this drug beforehand. Weigh up the severity of your acne and your self-esteem against the intended benefits, but be certain that you're willing to pay another price in the long-run. The choice is ultimately yours, but if you are being prescribed accutane and there is no other option than living with low self-image, it's important to realize that you've been let down - by your medical practitioner, your support network and/or by life.

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17

Accutane is poison...Don't take it....It almost killed me, I couldn't walk for 4 months. I have severe osteopenia high fx risk, I shrunk a 1 1/2, I have thyroid problems now, major tendon,ligament,joint damage, it burnt my eyelids which are now constantly dry and swollen, along with dry eyes,mouth and body,I now have ear infections (30yrs and never had one), Accutane gives a whole new meaning to anorexia, I lost all muscle and fat on my body and massive amt of weight...It took months to regain just some of this and to top it off I am swollen behind my right side of the head...mri and mra shows nothing....No Doctor Cared about any of this stuff just shrugged thier shoulders as well theese things happen.....
I think really hard before you put this chemo drug in your body...I wish someone would of warned me, told me what this poison was...
Don't Do It there are safer alternatives.........

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3

Dennis,
I am sorry to hear about your health situation. Have you mentioned to your Gastroenterologist that you were prescribed accutane at 15 years old ? Accutane has been proven in a court of law to cause Irritable Bowel Disease. If you would like, email me at Scottp623[at]aol[dot]com and I would be glad to send you some information I have collected. My son seems to have some of the constant pain in his joints, also in his shoulders, both wrist and right hand that you have. Have you had a bone scan done ? Please email me. You are in my thoughts and prayers. I was amazed once I started researching this medication on how many others are out there with similar health problems after taking accutane. I will be looking for your email. Best Wishes !

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14

I suffered from acne in my 30's and took the antibiotic Minocin for years. It worked fairly well. My doctor asked me if I wanted to try Accutane to clear up my acne for good. I used the drug for the medically prescribed time in 1997. It cleared up my acne and it never returned. Ten years later, I am suffering from chronic pain syndrome - arthritis type symtoms in my back and neck. I also have inflammation in my S.I. joints that can't be explained. I now take an anti-inflammatory drug called Mobic and use a muscle relaxant called Skelaxin. Every day is a struggle with pain. I've always wondered if taking Accutane is the cause of my illness. I am 48 years old now and barely able to work full-time. I would not risk taking this powerful drug and recommend alternative treatments.

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11

i took accutane when i was in high school. up until now i feel like accutane worked great for me. i am now 25 years old. at the time of taking the medication i had all of the dryness, chapped lips, very pale and easily burnt skin. i also had to constantly get blood work done. at this time i am currently losing hair. hair loss is not in my family. i was wondering if there were long term side effects of this drug that causes that. or could it be the side effects finally catching up to me now. and could i do anything to help my case.

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16

Hell is where I have been living since taking Accutane years ago. I was perfectly fine for a year after taking it with just some slightly dry lips and skin and then my health went straight down. I mostly live the life of a vegetable now, unable to participate in most activities because of chronic pain, lung problems, gastric problems, chronic fatigue. Accutane will reduce your capacity to enjoy life and creates a depression that is unlike any other.

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60

My son took Accutane when he was 16 years old for about 4 to 6 months in the spring & summer. That December he was diagnosed with a rare blood disorder called Aplastic Anemia. This disorder is when your own immune system attacks itself and your bone marrow does not make enough white, red and platelets to support your body. It is treated just like leukemia. They only find out 10% of the time what causes it. In his case it was never proven, but I always thought Accutane had something to do with it. My son went in for chemo, radiation, and a bone marrow transplant two days after his 18th birthday. The transplant took, but his kidneys shut down, his liver became and issue, numberous blood clots, seizures, all things that normally do not happen after a bone marrow transplant. This New Year's Day, my son died of a massive coronary heart attack. The autospy showed that his heart looked like that of a 60 year old, had hardening of the arteries and 90% blockage of the blood vessels. He was a healthy teenager until he took this drug and now he has left us. Any help out there on Aplastic Anemia and Acutane would be greatly appreciated.

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18

I have had reoccurring stomach problems for years now. Looking back I believe it to be the accutanethat did this. I took accutane my sophmore year in high school into my jr year, then starting at the end of my senior year i started getting stomach problems, a weird cold pain/discompfort. For a while it was bearable so i ignored it but soon i found myself in the hospital with an innersuccepted bowel. Wich means my intestines basically kinked in on itself. they cut my open to repair my intestine but it was fine when they went in so i basically had a major stomach surgery for no reason. I have had over a year of testing and doctors and no none can explain what happened or what is wrong. I lost 30 lbs from the surgery and it took me over a year to gain it back. i have been having a problem gaining weight, and also a big problem sleeping at night. i find myself tired all the time, even after i slept for over 12 hours(which most of the time is during the day when i shouldnt be asleep). After researching on the internet i believe accutane is to blame for my problems. I basically live with this pain every day now because after years of no answers people are tired of looking for answers and hearing me complain. Some one needs to do something about the distribution of accutane to teens before more people end up like me!

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1745

I took the generic form of Accutane (Claravis) in 2010. I suffered the usual side effects while on it dry lips, sensitive skin, joint/muscle pain. The dermatologist prescribed 1.5 mg/kg/day with a cumulative dosage of 270 mg/kg for 6 months for a few pimples behind my ears. The dermatologist reassured me over and over that all of the side effects were temporary. Within one month of stopping, I developed digestive problems, dry hair, dry skin, deep wrinkles, ankle pain, back pain, shoulder pain, fatigue, tinnitus, early periods, basically accelerated aging. All of these side effects are still here with me today and don't look to be "temporary" anymore. I just found out that I am post-menopausal based on my latest blood work. There is no reason to go through premature menopause that I can think of except...oh yea this chemo treatment that I was given for a few pimples back in 2010. Unbelievable, this treatment ruined any chance of having my own child. The effects of this drug are worse than acne. Acne doesn't cause joint pain, digestive problems, dry skin/hair, hair loss, brittle nails, accelerated aging, ulcerative colitis, Crohn's disease, low libido, erectile dysfunction, infertility, osteopenia, osteoporosis, autoimmune diseases, etc. Acne doesn't kill your organs, your colon, your ovaries. This drug kills!

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1

I sympathize with you on the accutane. Even my neurology doctor has told me how the fda works and quite frankly it is pretty scary. If his stories are true than the fda is hand in hand with the drug companies and not the poor consumer. But back to the accutane. It has really changed my son's life but not the way it has affected yours. My son has had other accutane problems. I am not the type of person to sue and am a registered nurse but i want this to stop before too many more children are hurt. Here is our story. My son was on accutane for one year and it stopped his growth and fused his bones. I know this for a fact and could prove it. My son had wrist xrays to tell his bone age about 3 months before starting on accutane. The xrays showed that he had 3-5 years of more growing based on the bones not being fused. He went on accutane and after about a year or so i realized that he was not growing. we went back to the doctor and they did more xrays on his wrists. I was shocked to find that his bones had fused over the year he was on accutane and he would not grow anymore. I remembered signing a release on the accutane related to bone problems but it never said that it outright stunt your childs growth permamently. I would never had allowed my son to be on it if i knew it would do this to him. My son is now 19 years old and is 5 ft 3 inches. My husband is 5 10 and i am 5 5. His siblings are much taller than him. When he was a baby his growth chart showed him at 5 ft 8 inches. It breaks my heart to see what it has done to him. I am sorry if I offend any one who is short but my son would not be soo short if it had not been for the medication. I am sorry about all of the kids on accutane that have suffered in one way or another.

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24

Hello to everyone. I cannot believe all these stories about Accutane. My mind is blown how many families have gone through soo much trouble. I found this thread by doing an online search for long term side effects for this particular medication, because I want to know if its affecting me. I am 22 yrs old. and I took accutane for 6 months. 3 pills a day. I honestly do not remember the mg. My question to everyone reading is.. Can this medication cause long term emotional effects? My mood swings are like any young woman, but I have become a super sensitive person emotionally and it hasn't been this way until the medication. I noticed once while on the pills but didn't think anything of it. it was an argument with my stepfather, my heart raced, my hands shoke, and my anger level jumped quicker than it ever has. And now being off the medication for about 2 years now, I find myself in the same situation. my hands shake when someone confronts me. I can not keep myself composed when dealing with an issue. I know this may sound silly, or it might be just me being me without side effects. But I swear I was never this emotionally unstable until I took the acne medication.
On another note... whoever takes this... be warned about hair loss. I used to have super thick hair and as a ballerina, it was very hard to even put it in a bun. Now, anyone who touches my hair makes a comment saying how thin it is.. and I am only 22.

Thank you to everyone posting their stories... I am sure it has helped more people than you realized. :-)

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1746

Hello Everyone,

It was 6 years ago as of yesterday I remember starting this post in such an emotional wreck over concerns for my son that developed blood in his stool on his 6 month of treatment with Amnesteem (generic Accutane). Although Ryan will never have the health he had before being prescribed this poisonous drug, the response from everyone on here has help me cope and educate me to be able to be here for my son as much as a parent could be. The remarks left by others who have lost their child to suicide and have shared their story's of their love ones have brought me to tears many times along with the hopelessness some feel after we have found out we have been no more than a guinea pig for BIG PHARMA to make billions from these drugs. For those of you reading this post for the first time, please take a deep breath and read some of the remarks left by some that have very helpful remarks with that will help you along this very unexpected unwanted physical and emotional journey. May God Bless !

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12

Considering starting accutane for my daughter, age 14. Very concerned about the effects, especially since she is a very young girl whose body is not fully developed. We are currently trying a run of Yaz for 5 months now, and monthly dose of a Z pac. Also tried a herbal remedy. Seems like she has gone from stage 4 to stage 2 or less... Not sure but I have had a 2 different Diagnosis from 2 different Md's this week< The derm said cystic 2, the plastic surgeon (seen for scar removal) said chronic acne. After reading all of your posts, I am not sure to start her on accutane or not, esp since the 2 diagnosis were so different in one week.
I am a Registered Nurse and I understand the complications of todays medicine and their side effects. It is unfortunate that her acne has taken her from a year round great swimmer to sitting home inside all summer and not going to any pool.
However, I am going to consider delaying the accutane initiation.
My prayers and thoughts are with all of you who are dealing with the life changes from acne and the treatment courses out there.

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1726

Michael,

STATING THAT ISOTRETINOIN CAN CAUSE LONG-TERM REMISSION OF ACNE, WHILE ALSO CLAIMING THAT LONG-TERM SIDE EFFECTS ARE A MYTH IS JUST ABSURD.

You forgot to mention that many of Isotretinoin's effects are exerted through its all-trans and 9-cis metabolites, making the 22hr half-life irreleveant to this conversation.

Isotretinoin has also been obvserved to cause changes in DNA methylation patterns; which, for all intents and purposes, means the drug PERMANENTLY changes the way your cells work.

There is an encyclopedia's-worth of SCIENTIFIC EVIDENCE that Isotretinoin may cause depression. All one has to do is search Google Scholar for a plethora of peer-reviewed infromation on the topic. I think what you meant was that a link between Isotretinoin and depression has yet to be proven "beyond the shadow of a doubt." I'll give you that much.

Isotretinoin was also developed and used as a chemotherapy drug. There's no denying that. Dr. Frank Yoder discovered it's efficacy as an acne treatment through observations of acne in chemotherapy patients. Its use as a chemotherapy agent has dropped in recent times due to its relatively low effectiveness and toxicity compared to newer chemo drugs.

PLEASE HAVE THE DECENCY TO DO YOUR RESEARCH BEFORE YOU START CHILDISH NAME-CALLING BASED ON YOUR OWN PERSONAL EXPERIENCE WITH ACCUTANE. ACCORDING TO YOUR OWN ARGUMENTS, YOUR STATEMENTS ARE NO MORE VALID THAN ANY OF OURS.

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1844

Hello, I just wanted to share my story with accutane to spread the word on it's side effects because I wish I had done further research before I took the drug to clear my skin. When I first made the decision to go on accutane I was aware of some of the possible side effects, I went to a dermatologist at the sunshine coast and he told me through his ten years of treating patients with acne he has only had 7 patients with minor side effects and that the odds were in my favour of my acne clearing up with the only side effect most likely being dry skin. I was on accutane for 3 months taking 20 mg per day after three months I got pink eye. After that I took a break from accutane however the problems continued with back aches and head aches so I kept off the accutane. My dermatologist tried to convince me it was unlikely that the accutane was the cause for my pink eye however I made the decision not to go back on accutane. Even after I stopped the treatment my problems continued with stomach problems, bloating, extreme fatigue. 6 months after stopping accutane and I still have these problems although with healthy eating, plenty of water and vitamins they are very slowly easing and i hope they continue to do so. I believe with every ounce of my body that accutane caused these problems and that accutane is a form of poison that dermatologists are making profit from, and making it at the expense of your health and well being. I consider myself lucky that I wasn't on the accutane longer and my prayers and sympathy goes out to those who have had far worst problems than mine that I have read about on this page and other sites. Basically the chances are accutane will cause you problems. Ones that will surface even possibly only after you have stopped the treatment. And don't believe your dermatologists so called "statistics" because there are far more people that have suffered with side effects from accutane than you realize. It is literally poisoning your body to achieve clear skin. And I know how hard it is living with acne, but please don't destroy your health in the process of trying to gain clear skin because accutane is nothing but bad news for your body it will slowly destroy your health and immune system.

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15

Dear Lynn M.,
I read your post about considering getting accutane prescribed for your daughter. I only speak from the horrific side effects this drug has done to my now 19 year old. My son was a star track and football player and took accutane while he was doing both sports when he was 15. Since then, he has been unable to even swim in school and we have to get him an excuse every year because the chlorine in the water cased his face to turn cherry red and become extremely dried out from the medication. Your daughter may get her complexion better, but may suffer the consequences of never being able to swim in chlorinated water again. Unfortunately, my son also never again participated in any High School sports since taking accutane do to major joint pain and now has arthritis in both shoulders, both wrist and right hand. Thats only a few health concerns we have today from a decision a doctor made. Who in their right mind would prescribe a cancer killing drug to their child to clear up acne, if they only were told that up front. It's a decision I let happen 3 years ago that haunts me everyday.

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