Accutane Long Term Side Effects (Page 14) (Top voted first)

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 After I have researched this drug extensively, I can't believe that the FDA allows this drug originally made for cancer patients to be marketed for teenagers with acne.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?

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The same thing Pretty much happened to my son.He went on Accutane during break from college (sometime in the summer of 2010) . In January I get a phone call and he is in the mental hospital having a psycotic episode.He was on his second year working toward a PHD in electrical engineering when it happened.
Three years later he is still on antipsycotic meds, depressed. HeTried 5 or 6 times to go back to school , cant hold down a job, stays in his room basically 24 hours a day.
Theres no doubt in my mind this acne drug did this ! My son is,was a very kind, hard working person till he took this acne medication.Now hes a mess. Sczitzo-effective disorder.
And I cant find any quality help program for him either.
Most treatment programs characterize mental disease in the same catagory as drug addicts. My son is not a drug addict. He's never done any illegal drugs so Im not comfortible sending hin to these places.I want a good psyciatrist and psycologist that specializein Scitzoeffective dissorder but that is a tough thing to accomplish where we live.
This drug ruined his life

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I never thought I would have any issues arrise from accutane either. I was just fine both times I took this drug. Never any side effects. Now 3 years after my second round of accutane I have found out that I have gastritis..I also have a condition called vulvodynia. Both conditions are linked to Accutane. Let me be the first to tell you that you may change your tune when it is you who are suffering from the reprocussions of this very potent dangerous drug. I hope you never have to go through what some of us have had to go throught. Several years ago I would have thought the same way you are thinking until my body started to break down. I have always been a very healthy person. I eat healthy, I exercise daily, I am not overweight, I don't smoke, I drink only on occasion. It is very devestating to be told that the serious health problems you are dealing with are probably a result of accutane. I wish I had never taken this drug

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I hope you reported theese side effects of your sons to the FDA or drug regulator in the country you live in. My heart goes out to you and your family:( I wish I had something that would help us all - Jen

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@ Coleen

I to am in my mid 20s, 25 to be exact and took accutane when I was almost 17. I have some scaring from before starting accutane but its hard to notice. A lot of people tell me they can't even tell I had acne. Just like in your case, I believe accutane if taken correctly can prevent further break outs. This drug really changes the way your oil glands in your skin work, by shrinking them. That can also impact your skin in many negative ways.. It's ruff for me to judge what someone should do when it comes to accutane because I have a little sister that is beautiful but also suffers from bad acne. I know that it has always bothered her. Unfortunately she started accutane and could not afford or have the right guidance to finish a cycle properly and was also having a lot of side effects. I know it's ruff for people that have severe acne but there is a lot of side affects that come with this drug that can be life long. In my case I didn't have extremely severe acne but it was pretty bad. For those looking to take this drug I would first of all defiantly wait until your done growing, because it is already proven that extreme amounts of vitamin A which accutane is, cause growth plate closure. Number 2, It does a lot of other things with the bones, joints and the rest of the body so you might wanna look at the extensive list of side effects when considering to take it. Lastly, there are many people who take more then one course and still suffer from acne and inharrit some of the life long negative side effects and have worse scaring from when they were on the cycle. When I took this drug I was young and did it have strong parental guidance, and wasn't informed properly by my doctor about the many risk. Before you take this drug make sure to do extensive research and make sure the positives weigh out the negatives for you. @ coleen> by the way I wouldn't call accutane modern medicine.. I know people that took the drug in the late 80s and it was the same thing back then.

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Jrad I know you must be upset.. But you must let other people have there opinion.. Not all doctors are out to hurt people.. Your starting to sound like that quack job doctor Noah the wanna be doctor... I am not a supporter of accutane what so ever.. But I don't support jibberish either

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It is in my opinion, a very dangerous drug! My son is now 43, but took it when he was 14 or 15 and, he had almost 2 years of seizures, and was a horrible nightmare for several years after! The neurologist could never explain the reason. After a couple of years being on anti seizure med they stopped, and he has never had another one! We blame it on that drug! I would never recommend it to anyone!

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I know this thread hasn't been used in nearly three years, but I saw a story on the news tonight about Accutane causing issues such as these and put two and two together. Last January (2012), I began taking a small dosage of Accutane. My acne wasn't too bad, just stubborn, and we had exhausted all other possibilities so we gave it a shot. I experienced some of the more common side effects, mainly dry skin, and knew it was from Accutane but didn't worry about it. Well, around August of 2012, going in to my senior year of high school, I began experiencing severe nausea in the morning and any time I had anything relatively acidic. Come fall break, the nausea became more consistent and aggressive, but was still bearable. One week into the 2nd quarter of my senior year, I was at a birthday party and was hit immediately with overwhelming nausea. The color completely drained from my face and I couldn't see straight. The next day I went to go see my doctor, who thought the issue was related to my gallbladder. All tests came back negative and we moved on to other possibilities. I saw an ENT, Cardiologist, Neurologist, and Gastroenterologist. The ENT said I had Vertigo, the Cardiologist said I had Disautonamia (spelling?), the Neurologist said I had Abdominal Migraines (among other things that I cannot remember), and the Gastroenterologist said I had a little-known disease called SIBO. After enduring treatments for all of these diseases/disorders, we found treating me for SIBO was most effective. However, the medication to treat SIBO is called XIFAXAN. XIFAXAN is a very powerful drug used to treat liver diseases, and runs $700 a prescription. Because this issue involved not my liver but my intestines, insurance would not cover it. Therefore, we had to purchase XIFAXAN ourselves every 2 weeks as $700 for 3 months. I was not diagnosed with SIBO until the end of November so I didn't start treatment until the beginning of December. I missed the entire 2nd quarter of my senior year in high school and, going into the 4th quarter, am still in the process of making up all of my work. The doctors were never 100% sold on SIBO because it's very hard to diagnose. The only reason I continued with the treatment is because of its success. I did not think to put together Accutane and these symptoms. I will definitely tell my Gastro doctor about it and see what he says. Do you guys have any thoughts?

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Dont do it! I took it for a 6 month period when I was 16. I now am in constant pain, back aches, head aches, stomach problems, bloody stool, horrible joint pain, sore wrists, and Im only 26!

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@oli girl- you know I wish I could remember the name of the drug. My IBS was so severe that I felt like I had the flu 24/7 and could practically eat nothing. I'll have to do some searching and see what I can find out for you. I was so nauseous all the time as well.

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The problems everyone here is having are the main problems associated with Lyme and coinfections, just look it up. Most people with Lyme has at least one coinfection, which causes additional symptomatology and differing symptoms. Accutane weakens your immune system and allows the Lyme bacteria to take over. The problem is, most physicians are Lyme illiterate and wouldn't even think of it. Fortunately after Accutane, I had just enough sense to figure this out on my own!

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Same thing happened to me when I was 15, I even said to my doctor if it can stunt my growth I don't want to take it, of course she said it wouldn't do that. As a child my growth chart and what doctors always told me was that I would be 5"11. At 15 I was 5'7 &1/2 but I was still clearly underdeveloped, hands, wrist, head, jaw, everything was still very small, no one in my family is under developed in that region. I had friends taking accutane at the time so I didnt think it could be that bad, just some temporary side effects like dryness and joint pain. Which is what all the doctors only tell you. I started growing late so I was one of the boys that was catching up to the other guys in my grade which was exciting, but I still wasn't a "man" like the other guys. The joint pain in my knees was so severe that I almost quit football but the doctor lowered the dose and kept me on it for longer. Little did i know this was probably the process of my growth being stunted. I am almost 20 now and I'm the same height and weight as when I was 15. It's not the height that bothers me its my features like my head, wrist, and hands that never changed... Life just isn't the same anymore, I am not as happy as I used to be and just don't feel comfort in my own body which is really sad, and seeing kids that were always smaller than me growing up just reminds me of it. I can forget about it and move on temporarily but little things like, someone mistaking me for a young teenager or seeing everyone else in your grade grow up just brings me back to square one, sad and depressed and wishing I never took accutane. You can tell I would have kept growing just because of my small features and the fact that i've been getting harrier over the years. I try to live my normal life having lots of friends and going out and having a good time but my attitude is changing and it's changing me sadly.

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Hi Lynn,

My name is Tommy, i am now 19. I took accutane over 5 years ago. It also stunted my growth and development as I am only 5 5 and a half. There isn't a day that goes by that I think don't think about how I could have or was suppose to develop normally. It is disgusting that doctors and pharmaceutical companies offer this drug to teenagers knowing thg it will halt and permanently stop their development. In this world where appearance is important, I feel that I ruined the appearance of my future self. I wish I would have let the acne take its course.. My question and reason for replying to you is, how do you and your son cope with all of this? What does your son tell himself or how do you move on from this decision? I am sorry if I struck a nerve, but I really need someone to relate to.

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Hi Tommy,
I am sorry to hear that you have experienced side effects from a drug prescribed to you for acne like my son and so many others. You have asked some great questions that I ask myself often too. How can this happen?? How could we have be so naive to take this poison and how do I as a parent live with the fact I also agreed to let my son take 60 mg of Amnesteem everyday for 3 days short of 6 months until he was rushed to the ER during a school sports event when he became very ill. Only to find out his colon was full of nothing but blood from the medication drying him out inside( Pharma company did admit to that). For me and I am sure with most parents, we witnessed our child having severe acne, took them to the doctors, and a dermatologist office in our case told us " He needed to be on this medication". And like so may others, the dermatologist said when asked about side effects, quoted " Your son may have dry lips after the treatment and most kids always carry chapstik in their pockets for years to come. Don't worry about ANY long term side effects, depression is the only thing we worry about in males and we will see your son every 30 days to make sure there are no changes in his mental health. I have prescribed Accutane to over 1000 patients, read many studies on the drug and I only know of one case where a depression happened and Accutane was stopped than". Don't concern yourself about signing the new "I Pledge contract", for it only concerns women getting pregnant."
I trusted the doctor, since they where specialist and everything went downhill from there. It has been tough to see a completely healthy son go from someone with many dreams of playing sports and now suffering on a constant basis with pain. Having more test done on him before he was 18 years old old than allot of people get a lifetime. Full body bone scans, colonoscopy, cat scans, x-rays and medications to name a few. 9 different doctors in 4 years with still no solid answers on how to heal him.
You ask "how do we handle it now?" My son has not grown since he was 14-15 also when he took Accutane (Amnesteem), but he had a growth spurt right before he took the drug. So he is 5' 10''. His back, wrist and hand ache most days and he has IBS. He has learned to stay away from allot of foods that make him worse, and he simply is not physically active anymore. He had compartment syndrome on his right leg two years ago and was operated on that. Still we don't know what caused it.
As a parent, I pray allot for him. As for him, I think he tries his best to stay up beat, but he keeps his thoughts to himself which can be irritating for a parent at times. He seems to be doing Ok these days. He just graduated from college, has a nice girlfriend and a good head on his shoulders. His hair has become thin, but handles better than I would at losing my hair starting around 18. The doctor wanted to get a endoscopy last year due to stomach problems , but insurance company will only do it if he has another colonoscopy first. He has refused to have that done again at this point.
I can tell you that once I started looking so much information on the computer, educating myself and becoming friends with others that have helped me as a parent get by. Stay connected to this site and dont be afraid to ask anyone of those who have left remarks about their health that may be similar to yours. People are here for your support.
Stay positive and check into the Candida Diet. It helped my son with digestion, brain fog and a better overall feeling. He did the diet for 3 months straight 2 years ago and now watches what he eats but doesn't completely stay on it daily.
From the Heart,
Scott

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Thank you Scott, your detailed message really means a lot to me. I am happy for how your son seems to have moved on and increased his positivity about life. I am grateful for him that he has a parent that understands that many physical and/or mental problems that many of us prior users face is due to the accutane. My parents don't seem to want to hear it from me. Everyone says, how do you know you weren't supposed to end up like this? My mom and grandmother have helped me realize that I can't go back in time. I feel that there is a plan for all of our lives and that however disastrous this event in life might have been, it was meant to happen. I am happy that your son was at least of normal height before the drug stunted his growth. In regard to my problems, I struggle with depression mostly, which I feel comes from a lack of testosterone. I also used to be the athletic sports star, and now I feel like an old man. I understand how your son does not like to talk about it because it is such a negative topic. I try to repress the memory as well. However, thank you for talking with me about this and I plan to stick in touch with this forum whenever I feel I have an unexplained problem. Even though I do not know anyone here, I feel a closeness to everyone as we all had our lives affected by pharmaceutical companies. All of us affected could sit back and wither away in our illnesses. But we can all make it through this. I am sorry if I don't respond, as sometimes I feel that it is best to try to move on and not live in the past.

Thank you. Tommy

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Hello everyone. After some research, I have found one reason for accutane causing fatigue, impotence, depression, and loss of overall well-being for men. Through studies, accutane has been proven to inhibit the enzyme 5AR which reduces testosterone to DHT, a much more potent androgen for the male body. The only place where testosterone affects the male body is the muscoskeletal system. Of course testosterone is needed in order to create DHT, but DHT is much more important for every other male quality, including hair, body hair, sexual and reproductive systems, and sebum oil production. Thus by inhibiting 5AR, DHT decreases in the body, therefore highly reducing acne in males. You may be saying, ok well this guy had too high of levels of testosterone and DHT to start with, so now they must be at normal levels, right? Well for many men, they're bodies were not meant for these lowered levels so early in life, resulting in the aforementioned problems. Unfortunately, 5AR is permentantly inhibited to the extent of the treatment of the accutane a man had. This affect may lead to hypogonadism in many men resulting in the fatigue, impotence, depression, lack of emotion, lack of motivation, anxiety, depressive spells, and loss of body hair. I would highly recommend any man feeling these symptoms go to an endocrinologist and get their DHT and testosterone levels checked. Speaking from experience, I am not even 20 and now have the levels of a man in his 70s. Even if you are labeled "in range" you probably are not in range for a man your age, as the range scale goes from ages 18 to 80. I am not a doctor or scientist but it is all starting to make sense. Accutane ages your body and systems fast. Men who have taken propecia, an anti balding drug which also inhibits 5AR have a website and many forums complaining of the same permanent symptoms many male accutane sufferers have. One more thing before I finish this post is I hate when people say oh your cognitive function isn't impaired, look at all you have researched and figured out. I wish those people could experience one day with the long term effects accutane has caused so they can understand. I remember how I used to feel. The only reason I move on is that I believe that God did this to me so that I would finally believe in his teachings and repent. I suggest many people look to Jesus for answers. Bless everyone that has suffered. It's not your fault that this has happened to you or a loved one.

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My 17 year old son took Accutane from Sept 2012 until March 2013. He started out by taking one 40mg tablet a day. His acne was not improving, so after a couple of months he started taking two 40mg tablets a day. In May of 2013 he was diagnosed with both pancreatitis and ulcerative colitis. While taking this drug, he had blood drawn monthly. I was always told that his blood results were fine, and
that he could continue taking the Accutane for the full six months. I had no idea at the time, that side effect from this drug would show up after he had stopped taking it. I wish I would have found this website before allowing my son to take this. This drug NEEDS to be taken off the market.

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Andrea, I just got done reading your post from yesterday. So many of your problems are the same as mine. One of those that stick out to me is the facial flushing. I took Accutane when I was in my early 20's(I'm 53 now) and have been fighting this facial flushing ever since. I know exactly how you feel and it can be embarrassing. People have commented on my red face from time to time. I just tell them it happens when my neck hurts( I have bone problems from the Accutane also). I never equated the facial flushing with the Accutane until reading the posts on this forum. And you are right, just about anything can trigger it to happen.
Next similar problem is, the dry skin. I'm sure everyone that took the Accutane deals with this problem. One thing I know about the dry skin is that it gets alot worse in the winter. I used to live in Louisiana in a very humid, moist climate. Before taking the Accutane my skin was VERY OILY. After I took the Accutane the oily skin went away. My skin would dry out and more so in the winter. Living in La I could still tolerate the dry skin even in the winter since the climate there was so humid. Now I live in NC and the winter's here are more extreme. If I wash my hands too much in the winter I experience "cracking and bleeding". I have to keep lotion on my hands as much as I can. I also have had problems with bad breath. This seems to come and go. I thought it was related to my acid reflux but, I have my doubts now. Digestion is a problem too. I've had periods were I go from loose stools to normal stools. I'm not bothered with constipation unless I get stressed or don't eat right. I try to take a fiber supplement like Metamucill when my digestion gets out of whack. It seems to help. I drink more liquids when taking the fiber. This is a must when you take fiber supplements or you can get constipated instead. I find that since taking the Accutane in order to control my digestive issues I have to watch what I eat very closely. I try to stay away from junk foods, processed foods and try to eat more healthy whole foods. Junk and processed foods are not healthy for a body that is already stressed due to Accutane. Sweets are a problem too and sodas are a "no no". If I eat the right stuff most of the time then, once in awhile I can cheat and eat some of the wrong stuff without being thrown in a tailspin. So many times I think back to before I took this drug and how my life was so different/ normal in every way. If I could go back I would gladly take the acne over this hell. I hope you can find some positive ways to deal with your problems and know that you are not alone! Try to eat right, get some exercise, rest and spend some time in prayer. Wish I could think of something else that would help you.
Take care,
Ernest

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Hi Guys.. there was a recent story in the daily mail in UK recently as a horse trainers nephew had taken Isotretinoin I think Generic Roaccutane. Her name is Jenny Pitman. The young lad committed suicide and they published it in the newspaper..
My son 2 yrs 8 month after taking this poision still suffers joint pains. Migraine and tinnitus for the past 13 months at least . He has not been out of the house on his own since last April 2012..

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Hello everybody I am 21 year old guy who has severe cystic acne. I have tried everything else with no success and this acne has ruined my confidence. Before acne I was a confident guy that had to no problem making friends and being the life of the party. I used to be great with girls but now I am afraid of being rejected by them because of my appearance. People have even mocked me at my job because of my appearance. However, after reading these stories I am very afraid to go on Accutane. Does anybody know the odds of suffering from these devastating side effects? Does anyone know of alternative treatments for severe acne?

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@patty Is that really what you read? That most people that took accutane have big improvement and only a few got side effects? or is that all people get side effects and its something you are not wanting to accept so you can suffer the consequences on your own and learn from your own mistakes? have you not seen how many people are on this board complaining about their pain? why can you not see it? why are you reading and researching about this drug if you plan to take it anyways and suffer the hardway? I guess you dint read about the statistics that for every 220 people that took accutane at least 7 people or more will try to commit suicide? depression isnt from the acne.. its probably from the lack of hormones coz accutance destroys everything? or maybe because I read somewhere that there was a man who was stuck in the wilderness and it was snowing and that the only thing he found to eat was bear, when he ate the bear for his meal, he accidentally ate an organ that was apparently super rich in vitamin A and he developed mental problems like schizophrenia. well... huge doses of vitamin A does this to any human being. its not just coincidence. I hope you dont destroy your future since you are so young. try to learn from other peoples mistakes. The earlier you realize it the sooner you will be saved from misery. there are millions of other things you can trip on and take instead of accutane. Please for crying out loud.... get it through your head... this isnt a miracle drug. It is false advertising. Of course they want you to believe it coz they want your money. do you even know how much a pill cost? maybe you never had to worry about money but you might need to shell out a lot of cash just to take this and kill yourself slowly. id actually rather you take a pill that has a hit than this drug. of course im being sarcastic coz reading your response is very irritating. Please open your eyes.

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