Accutane Long Term Side Effects (Page 28) (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 After I have researched this drug extensively, I can't believe that the FDA allows this drug originally made for cancer patients to be marketed for teenagers with acne.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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I am 34 years old, I took accutane three times in the past 7 years the first time for 6 months, then a few months later I took it for another 3 months. Then in 2008, I began taking it again for 4 months. I have since then had severe stomach cramping many times doubling me over in pain, diarrhea, I have reflux and heartburn almost everyday. I also have hip an knee pain that no Doctor can explain. My knees swell up twice their size and are so painful I cannot walk. The other day my joints hurt so badly I just cried. Painkillers, anit-inflammatory meds nothing works. Even a shot of cortisone into the joints only worked for a month before it happened again. According to the Doctors there is nothing physically wrong with my knees. I never considered that accutane might be the problem, but now I am wondering why at 34 I have all these problems, I feel like a 70 year old. I also had lasik back in 2006 and my vision regressed after two years, I now have night blindness and I am stuck wearing glasses. Due to the cutting of the flap I cannot wear contacts. My eye Doctor cannot tell me why this happened, but now it makes me wonder.

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I am 19 years old and currently on accutane. I'm yet to feel any side effects others other than dry lips and skin, I could probably turn around and blame my tiredness or mood swings on it, or I could be realistic in the way that I've always gotten very tired after exams and that I've always had mood swings.

I know of many of the side effects people have listed here, and I know that some of them may be long term, I also so know that as all medication they aren't sure if there is any other side effects. I know this because I read through the 50 or so pages provided to me with my medication. I made the decision that I'm willing to risks it.

I feel deeply sorry for a lot of people here and what has happened to their families. But I also feel sorry for any person that will not have the choice to access accutane in the future if it happens to be taken of the market.

I think the biggest problem with this drug is the lack of information provided by doctors. A lot of drugs get misused or a lot of people don't understand the drugs they are on. You can not blame a drug company on the fact that your doctor didn't give you the information. More so, in these past couple of years where there is the internet available for most people the information is there, and I even at 19 have taken the responsibility of doing my own research of the drugs they are on, I hope everyone else does to.

I understand, a lot of people here took accutane at a time where there wasn't a lot of information on the internet, or even at a time when the internet exist. I have to wonder; 20 years ago when you took accutane do you think even the drug company knew of the long term effects for what it was being used for? Because I don't.

Like mentioned I feel honestly very sorry for what has happen to some people here but I believe that the biggest problem with this drug, and many others, is the lack of information people are given and then how regulated the use of it is. Doctors shouldn't be allowed to prescribe 80mg a day for 6 months, I know mine isn't allowed too. I take it a lot of you guys are in the USA?

So to all of you that weren't given the information of what you were signing onto and didn't get to make the same informed decision as I did, I am sorry. I don't hope for the drug to be taken off the market, but I hope for future users of accutane to be able to make an informed decision, weighing ALL the ups and downs, and for them to be treated properly by their doctors who we put so much confidence in.

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Hey Roy,
Yes its the Kangen water that I've been drinking. Yes they are a little expensive for the machine anywhere from 1-5 grand so not that cheap but if you have any kind of condition it could be one of the best investments you can make for your health. It does amazing things- not only for your health but for cleaning fruits, vegtables and everything you eat since most fruits and veggies are sprayed with oil based products so its not cleaned off by rain or normal water so we eat alot of toxins. The machine actually has 5 different pH levels for the water and all levels do different amazing things from cleaning your skin to your house. They are a little expensive, I'm still working on trying to get my own machine but over a couple years with the money people spend on bottled water and other drinks you'll end up saving in the long run so I figured it would be much worth it for my health. You can send me an email if you want any other info or have any other questions.

Thanks,
Steve

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Linda- Have you had any blood work to test for autoimmune such as R.A.? Accutane is known to cause RA and lupus like syndrome. I myself know 1st hand. I too have no sucess w/nsaids etc...I take plaquenil now that lupus pts take and it has helped w/things.

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I was given Accutane not once but twice during my teenage years.. the first time at 16 and the second time at 18..both runs cleared me after the six months of taking it but not permanently. The first run did indeed end with a diagnosis of anorexia as well as severe depression which we did not know at the time were side effects of the drug. The second run at 18 was even worse. Of course at the time it seemed there was no alternative as I had severe cystic acne but here I sit, now age 32, with a thyroid condition (developed at 22), other minor issues I never had before like sinus problems etc.. as well as on again off again boughts with acne STILL! Yes at the time Accutane was a miracle drug for me but now I see an endocrinologist who treats my HORMONAL acne from the source whenever it flares up which is what many of you should look into before Accutane. It could very well save you from lots of extra issues later in life as well as even your life itself!

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My son took accutane for 6 months.His Sophmore yr. of high school. He was very active playing three high school sports. Due to chronic abdominal pain from taking accutane he had to be home schooled his Jr, & Senior year. Now he basically stays home because of the chronic pain. Has anyone found any way to relieve abdominal pain do to this HORRIBLE DRUG. I would not take accutane . It is very sad to see my teenager that was an active student with a 4.0 GPA, just surviving every day in chronic pain. It really breaks my heart. Does anyone have chronic abdominal pain from accutane use? If so what or how do you deal with it?u

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Lisa- Sorry to hear your story about your son and others here. I have a lot of damage from the drug. What has helped me is a total Gluten Free diet (no grains)...check out www.glutenfreesociety.org and talk to Dr. Osborne on there. This has help take some of the pain away.

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I was put on accutane when I was in 10th grade. I didn't have necessarily bad acne, it just did not respond well to any other conventional treatments. While on the medication I had the typical dry skin and chapped lips. Despite the 6 months of torture, The medication cleared up all my acne.

I am now a sophomore in college (4 years later) and I believe I have had some long term side effects...

1) Emotional- looking back comparing my early high school years and previous middle school years I was miserable and isolated myself from many people who were my friends. I can't say for sure though if this was caused by the accutane.

2) Immune System Irregularities - I never had any allergies before taking Accutane. Every spring since, I have become extremely allergic to Oak and Birch pollen. I become asthmatic and get a persistent cough. The post nasal drip usually results in walking pneumonia. These allergies are so bad that not ever 2 rounds of prednisone provide any relief. Preventative steroids don't work either. The only way to treat it is by directly treating the symptoms Hycodan cough syrup (which I hate taking as it knocks me out and really shouldn't be taking during class), antibiotics (to treat the pneumonia), and flonaze (to stop some of the congestion).

Additionally, I have become prone to staph infections. In fact, last year I had one that was so bad, I had to undergo surgery.

3) Muscle Pain-
Throughout my high school days of playing sports I developed severe lower back pain. I had 4 doctors investigate the cause but none of them could find anything wrong. This ultimately made me have to stop playing Soccer and Lacrosse, two sports I excelled at. The only sport I have left is competitive swimming due to the zero impact nature of the sport. I will say about a year ago my back finally began to feel better.

4) Digestive System - I never ate cafeteria food until I came to college as my high school did not offer a hot lunch program. I have found that I cannot eat processed foods without feeling sick to my stomach and experiencing digestive issues. The symptoms I feel when eating such food is very similar to IBS but I have not been formally diagnosed.

Now I can't say for sure whether or not these problems are linked to taking accutane, or if it's just coincidence. A lot of stuff happens in high school socially and while aging. I can't help to think that at least some of these issues are caused by taking that medicine, especially reading some responses here.

The medicine works great as an acne treatment however I am not sure the risk is worth it. I feel like I used to be a very healthy person but now I have all these quirky ongoing health issues. Accutane really seems to mess with your immune system and I would recommend seeking other alternatives before risking your health.

Does anyone know there is any link between Staph Infections and taking Accutane?

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Lisa- I would take your son to have gastric testing, as accutane can cause numerous gastric issues along with chron's and IBD and I agree that many of us benifit from Gluten Free diets, however I would still get it checked to safe.

Eric- Yes many accutane suffers have lung problems, infections, lowered immune systems. I will have to look, but there was a study about accutane users and caring staph more soo then others. You story sounds like soo many others.
Trying doing crunches and streches for the lower back it has helped mine...

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In response to Dr. Fort Worth - if you have never used piracetam you probably should keep your mouth shut. Piracetam is a miraculous substance and while I don't necessarily agree it fixed someone's depression after a 3 year hiatus from accutane, it probably did give him a bit of a jolt mentally that he could be confusing with reversing the effect of accutane.

In fact, I have been taking piracetam for a few years now and did throughout my entire accutane experience. It does a great job of facilitating enhanced memory capacity and keeping energy levels high. I could go on with other uses for piracetam, but I don't see why you deserve it.

You don't even know English very well or science for that matter. Piracetum connects brain neurons used for alzheimer's patients. Throw your degree away and try again.

Piracetam has never been shown to connect brain neurons. Piracetam binds to an allosteric site on AMPA receptors that allows them to dimerize more readily. Then end result is enhanced transmission capabilities for neurons that express and utilize the AMPA receptor during neuron-neuron communication.

In short, I suggest to anyone using accutane or simply living a life to take piracetam!

PS: Your brain continues to develop throughout your entire life!

Dc, Fort Worth Says: Report Abuse
Friday, 8/20/2010 4:43:53 PM

It scares me to see someone actually suggesting Piracetam. I checked our son's computer and he used this stuff, as well, probably to correct his after effects. He complained of memory problems and not feeling the same as before. Little did he know your brain can keep on developing until your mid to late 20's(according to the article from NPR by Richard Knox/March1, 2010). Piracetum contects brain neurons used for alzheimer's patients. Ask a doctor you trust and research it beforehand. I am still trying to find out if it connects neurons too well/over-stimulating them.

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TO ANOTHER ONE OF THESE>>>First of all, glasses are in order here...I am not a doctor, just a mom who is grieving over the loss of our 23 year old son. I have many questions and I am looking for, at least, some answers here. And yes, the brain keeps on developing...certainly! The physical brain,... studies show the neural insulation isn't complete until the mid 20's, as the article I suggested for anyone to read, states. And yes, pills, chemicals...anything un-natural scares me, a mom. I love my children with all my heart and I ache because our son told us it all started when he was 17 and he was taking accutane at the time. We were told in 2001 at the time and it was stated on a brochure it was a form of Vitamin A. May you never know our type of grief or experience our deep pain. Excuse me if I typed something the wrong way or offended you. And yes, be responsible with the info you suggest here. Adults are not the only ones reading this forum.

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I took Accutane a little over 10 years ago for acne that kept coming back. I think it took it for only six months and that was all I needed. Before that I had nice hair, more on the oily side and never had dry anything (most of us with acne are too oily!). Even at 10 years + later, my hair has not returned to normal - it grows in dry and I don't do anything to to it (color etc). Even moisturing products don't do much long term. My hair has gotten progressively thinner over last 10 years - whether this is due to Accutane or not I can not know. My nasal pasages are dry quite often. My eyes are on the dry side too but it doesn't bother me (I had my eyes lasered eight years ago so that has something to do with it too). So my skin is great - I still a pimple every now and again (and I am 40) but it never oily. A several years after I took Accutane I lost half my hearing and now have to wear hearing aids. I also tinnitus in my left ear that develop too several years after. I have no idea if these things are related to Accutane or not. But I often wonder. I also developed Type 2 diabetes just this year and many diabetes suffers are wondering if Accutane might be a precursor in this -esp. Type 1. The summary of my story: If I had to choose now whether or not I would have taken that back, I would say no. I have no why of knowing whether or not it is the cause of some of problems but I think it is at least in relation to the dry nose and hair and I am certainly very suspiscious about what caused my hearing loss since they don't know. Yeah, my skin is clear - but I still have scars and now I am getting older so lack of natural sebum is causing dryer skin. I wish I knew than what I know now.

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Actually WORRIED MOM IN COLORADO

Accutane was not taken off the market, as I took it into fall of 2009 and am taking it now again into fall of 2010....

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My fifteen year old has moderate acne, and is really putting pressure on me to let her go on accutane. Antibiotics have helped a little, but haven't completely cleared it up. After reading through all the posts here, I feel just terrified. I tried discussing it with her, but she says she doesn't think bad long term effects are very likely, and her mind is made up. The dermatologist also said that long term effects are unlikely. I am thinking of withholding permission after everything I have read. But I know she will hate me for years. I just don't know what to do.

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OK from what I understand is that it was taken off the market under Accutane, but still on the market under it's other names. Now someone is saying it's still on the market and they are on it right now do I understand this correctly? That's scary!

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I took Sotret (isotretinoin) 40mg/day, for five months when I was 16. My skin cleared up within a couple of months and stayed clear for the rest of my treatment and for about 6 months after, although some of the acne has since returned. I lost 20 pounds while taking it, though gained 15 back after stopping treatment. I currently weigh 115 lbs and I am 5'4 and I don't consider myself overweight by any means, so the weight loss seemed strange to me. Also after taking this drug my immune system has never been the same. I never used to get sick very often but now I'm lucky if I go a month without catching something, usually some kind of infection. I've had tonsilitis, bronchitis, strep, mono, etc. when I used to just catch a cold once or twice a year. I am also very fatigued most of the time, and I try my best to exercise (I run 2-3 miles maybe twice a week), and get enough sleep but I'm still way more tired than I should be. I saw a doctor who tested me for anemia, iron deficiency, diabetes, and thyroid problems. My results came back normal for all tests so we still don't have an explanation. Within the last year I have experienced some minor stomach problems which have been getting worse. I often feel very sick after eating and my upset stomach keeps me up at night sometimes. There are many foods I have to avoid because they cause me bad stomach pains and nausea. I've tried antacids but they don't seem to work. I now get really bad motion sickness too, that I never had before, which I think is caused by my constantly upset stomach. I also get a lot of joint pains in my shoulders, elbows and wrists especially during physical activity, which sometimes gets so bad that I have to stop. I guess I have no real proof that any of this was caused by the isotretinoin, but after reading the stories here I'm starting to see a connection. My prayers go out to all of those who are still suffering because of this drug.. I agree with most of the others here, if you know anyone who is considering taking isotretinoin please don't let them take it!!!

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Also forgot to mention, I am now 19 years old so it has been about 3 years since I took Sotret

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To All- Roche's brand name Accutane was taken off the market in the summer of 2009 in the U.S. Generics are still out there and no diffrent. If someone in the U.S. is taking Brand Name Accutane then they are doing so by web which is very dangerous!
scared for the future- have you been tested for celiac or lupus etc... Accutane know to cause theese issue or at least mimic in what seems you have them.
what things have you tried, have you had a dexa scan or xrays of where the pain is?

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I started taking Accutane in Junior High. After about 4 months on Accutane, I could no longer take it due to the pain in my joints, as my legs would collapse from under me during PE. Around this time, I become lactose intolerant and started suffering either chronic diarrhea or constipation, IBS, which I still have today. I saw multiples doctors and underwent multiple procedures to come up with nothing. I also became abnormally depressed and started inflicting self mutilation, I bear those scars today.
In high school, I started developed frequent cold sores, canker sores and elbow rashes. Years later, I have now determined that I am not only lactose intolerant but now gluten intolerant which induces the sores and rashes due to an autoimmune disease. I not have severe paid in my neck, back and joints. My spine/neck ache throughout the day. It makes it very difficult not only sitting in a chair at work but everyday life. I'm only 24 but feel like my body is that of someone in their 70's or 80's.
In additional to all my problems, Accutane truly stunted my growth and has made it impossible for me to gain weight, as I am underweight. I am also the shortest and leanest out of my 3 younger brothers as well as my father. The worst part, no one will take my case because I haven't been diagnosed.

David

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I too was a healthy, athletic person who took 2 rounds of Acutane beginning around 1984 and ending in 1990. I was told about the dry skin but I had no idea it would come back to haunt my joints and tendons in a severly painful manner around 2000. I also wasn't aware at the time that it would hinder my immune system and make me more susceptible to illness and infections. I went from working out at least an hour a day before work, working a full day, then working another part time job and playing golf on the weekends to barely getting out of bed in the morning due severe neck, back, pelvic, joint and tendon pain, chronic diahrea type stools, and vomiting at least once every morning. My doctor said my standard screens were ok and that I simply had tendinitis, prescribing motrin to me. This was so long after I had taken Actuane, I didn't think to mention it to her. I went to her because I was already taking too much ibuprofen and wanted her to figure out what was happening to me as this ailment doesn't run in our family. At it's worst point, I could barely walk -- knees, achilles tendon, neck, shoulders, wrists, back felt like tendonitis bursitis and my muscle tissue was hypersensative like fibromyalgia and bruises easily. I quit the part time job and spent most of my time off sleeping. I suspected my contact lens were contaminated so I threw them away and went back to regular spectacles. I have night blindness and had a terrible bout with photophobia that knocked me out of work for a few days. I went to the doctor again for the migranes that came with the photophobia. I tried one drug that didn't work then discovered I was pregnant and couldn't take the other migrane medication she suggested. I had terrible morning sickness such that she had to prescribe a barbituate to make me stop vomiting. I had all the tests and check ups that come with pregnancy none of which appeared to be abnormal. She presribed an antibiotic to me about 6 months after my son was born. This made me so ill, I had a fever and my entire alementary canal was purged which again caused me to miss work. Since the doctors seemed to care more about treating the symptoms rather than finding the cause of the problem, I stopped seeing them and researched chronic fatigue syndrom as I felt my life was slipping away and the doctors weren't helping. Even after sleeping long periods of time, I still felt like a flash light with weak batteries -- a little brighter after taking a rest but quickly dimming again in no time. I feel a little better now but muslce spasms and tendon pain in my neck, shoulder, back or heartburn still wakes me up really early some mornings.I am 44 now, unemployed and it hurts to sit or stand for for more than an hour or so at a time. I have a young son who wants to play and I can't keep up with him. I also have to see a chiropractor at least once a month to tolerate the aches and pains that still plague me. All it takes is simple house hold chores or washing the car to make my neck, shoulders, and back swell, lockup, and spasm.

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