Accutane Long Term Side Effects (Page 15)

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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 After I have researched this drug extensively, I can't believe that the FDA allows this drug originally made for cancer patients to be marketed for teenagers with acne.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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281

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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282

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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283

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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284

accutane changed my life for the better. 30 yrs later ... dry lips but its worth it! i use chapstick . i think alot of people like to blame things on this drug that they would have had anyway.

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285

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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286

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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287

I took Accutane when i was 17 and now I'm 26. 9 years later I have no side effects except dry lips year round. Accutane got rid of my very bad acne and I was/am the happiest person ever. I'm sorry to those of you who had problems. But just so people out there know, it can work and bring on no long term side effects.

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288

I just finished over 5 months at 40 mg/day for two months and 60/day for three and a week or two. My skin is doing a hell of a lot better although these months of treatment have been the worst of my life in terms of appearance, as my pores have been literally emptying including ones buried deep down in my skin that have been buried for months and months before the treatment.

I stopped medication when I started to get a rash on my ankles after doing exercise (running specifically). A week or two prior to the major rash appearance, I had been noticing my skin feeling very itchy and odd/uncomfortable after doing my cardiovascular workouts. So when the rash came up, I figure it was time to quit.

A few weeks have passed and my pores are continuing to empty (it's almost done) and the skin feeling/rash are long gone.

I am a very healthy person with type 1 diabetes and take lots of fish oil in addition to superfoods, lots of fruit/vegetables and a very high protein diet. I also exercise 5-6 times a week, and have been doing this throughout the treatment despite some weeks of feeling pretty lethargic in the gym (a few times in beginning weeks I had to leave early because of the medicine).

But my suspicion with the many side effects is due to first and foremost using the drug at too early an age, and second a combination of not having a quality diet and healthy lifestyle.

So my suggestion to anyone thinking of trying is to only do it if you are physically mature and have a healthy body. It is not an easy therapy but neither is life with acne. I could probably post some more details or whatever but I think that is enough. We all know the risks but we should all be smart enough to recognize that if we don't take care of ourselves then something is going to get you sooner or later, whether accutane or anything else.

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289

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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290

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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291

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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292

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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293

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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294

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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295

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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296

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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297

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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298

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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299

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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300

Dear Sabzi,

Thank You for posting your personal story with what seems to be another typical Accutane dilemma. I am sorry to hear you have been through so much.

I started this post because I was so frustrated after taking my 19 year old son to 7 doctors and specialist before last over the previous 4 year .

My wonderful son will be 20 years old next month. He was prescribed Amnesteem when he was only 14. Today, over 10 doctors later and taking him to the so called best hospitals in the Western Pennsylvania/Ohio area we are still uncertain about if or when his symptoms will cease. I am so glad to hear that lawyers are now able to help people that took Accutane/Amnesteem and other generic brands that have been diagnosed with Irritable Bowel Disease from these horrible medications. But many more need to be compensated for what they have been through. Who will pay their medical bills if needed in years to come. The reality is, drying up acne and using these medications for Chemotherapy are only 2 good side effects out of hundreds. Many others have been left with debilitating health issues days, months and even many years later I talked to someone in California that was asked on a application medical form for a job Have you taken Acutane in your life ? If they amsered YES, they were not able to get certain health benifits from their employer. can you believe that ?

My goal has always been to find someone that could honestly diagnose my son and help him out with any future meds, vitamins; diets etc.
I have said before on here, that I just wanted to help at least one person that was considering taking these medications and would be more aware of the possible side effects than my son’s doctor never gave him.

We must continue to tell our stories, good and bad and give others a chance to use this forum as an opportunity to educate themselves with facts and personal stories of others.
Although my idea of contacting legal aid about three years ago after my son’s full body bone scan showed unanswered questions of arthritic changes throughout his body on whatthese meds have done. Even the manufactures of one of these drugs has admitted it caused my sons bowels to completely dry out causing significant blood in his stool and the feeling of passing out during his sixth month of treatment. Since that trip to the ER in 2004, I have over 50 unanswered health questions that can’t or won’t be answered by our health physicians. To this point I can’t find a lawyer in the United States that will take his case although I have had some that took a look at it.
These medications will go down in history of being on the top of the FDA’s biggest mistakes to justify one good reason other than a Pharmaceutical Company or one of their 100’s of Lobbyist they send to Washington D. C. to meet up with a politician that can get his pockets lined with money, perks, and a promise to give millions to their upcoming election to turn their heads on the poisoning of our youth.

May God help them on their judgment day!

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