Accutane Long Term Side Effects (Page 5) (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 After I have researched this drug extensively, I can't believe that the FDA allows this drug originally made for cancer patients to be marketed for teenagers with acne.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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Charlie is 3 mo out off the generic Acutane and is still symtomatic. Will this nightmare ever end. I read other posts and I can see that things could be much worse for him. Everytime I read the new posts, I get depressed my self that there is nothing I can do to get this stuff off the market. 3 mo ago I had a 15 year old kid that was college or military bound and now his mind is so screwed up that I cant see that for him anymore. I am now worried that this is not temporary and that this is something that he will have to deal with for the rest of his life! OH but his face looks great!

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I've created a comprehensive research report on Accutane's history and pharmacology. I would encourage everyone here to visit the link below and download it.

http:/­/­www.yousendit.com/­download/­cmczeW53YTJHa05MWEE9PQ

My research provides insight into why the side effects can persist for a really long time after people stop taking it. Hoffmann-La Roche explicitly states in the Physician's Desk Reference that they don't know how Accutane works or how it causes an incredibly long list of side effects, but I believe that they do know. I also believe that through my research I have discovered Accutane's true mechanism of action that Roche has been keeping secret from the public.

My goal is to expose the truth about Accutane, present the scientific evidence, and enlighten the world about its history/pharmacology and the latent long-term effects it has on the body, which will lead to more independent research being conducted to elucidate the cause of the side effects.

More evidence validating my theory on Accutane's mechanism of action

http://ragforum.freeforums.org/more-evidence-validating-my-theory-on-accutane-s-mechanism-t58.html

http://ragforum.freeforums.org/accutane-report-may-2009-t45.html

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Thank you for your help everyone. I quit the accutane at a little over two months.

I am no longer depressed and I no longer have mood swings. I can also run and train again without lower back and joint pain (I am a high school wrestler).

The only problem that I am having is the scars and red marks that accutane left me with. I might go in for laser scar removal. If anyone knows a way to get rid of scars please let me know.

What really surprised me was how much food effects our skin. I used to eat extremely well for a 16 year old (no soda no sweets etc). But what I figured out is that I wasn't eating enough vegetables and didn't get the right dairy products.

I switched my milk to raw grass fed milk from Whole Foods and make a big fruit smoothie every morning and I eat a bunch of vegetables for lunch and throughout the day. Instead of meat I now have a protein shakes as well. Along with drinking almost a gallon of water a day.

You would be surprised on how much this has helped my skin. I no longer have ANY acne on my back and haven't had anymore whiteheads on my face (just the left over small cysts that will go away in time). The red marks seem to be fading as well, just not as fast as I would like them to.

All of this has happened and I have only been off the accutane for about a month!

Thank you everyone on this board you may have saved me from facing wayyyy worse problems and to anyone on this crap please go off of it and change up the food you eat.

Thanks again and if you know of anything that will help these scars/ red marks away faster please let me know.

-Rob

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Thanks Scott...I feel that people should hear my comments and the comments of others. One more thing that I considered about Accutane...Why would any Doctor feel comfortable prescribing this drug to a teenager who is still growing and developing when they won't prescribe it to a pregnant woman? If it causes fetus abnormalities don't they think that it is too dangerous to prescribe to someone who isn't finished their adolescent growth cycle?

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Other consequences is an understatement. This medication has potential to permanently damage anything in the nervous system, circulatory system, skeletal system, and digestive system. After doing some extensive research (pre-med student) due to side effects I am blown away at the possible damage.
This drug rewrites your RNA structure and epigenetics. I think this is well known by the pharmaceutical companies that produce it... that's why we get some many symptoms months and years later (that cannot be tied to the drug according to the manufacturers). Rouche claimed that they didn't know how the medication even worked and that was their defense in court for why they could not be blamed for certain side effects. I took a generic and after pursuing a case with a lawyer was told that the United States court system has found that generic brands cannot be sued for any side effects under any circumstances.... so accutane is completely sue proof unless you took it in its original form (which was pulled from the market after being sued for hundreds of millions).

This is way beyond "should i take it or not?"... the answer (unless you consider yourself invincible) is a resounding NO. At 30 years old this drug has make me into a sick shadow of my former self from 1 yr ago. Severe nausea, digestive issues, terrible joint pain (neck, back and knees), random muscle pain, blurred vision, dry itchy eyes, massive hair loss, loss of appetite, fatigue, trouble swallowing, brain fog, trouble concentrating... it ruined my attempt at a post grad education for the last year, it caused me to max out my sick time at work (and get warned accordingly by my employer), and let me stress... my symptoms are only getting worse and adding new ones every couple months.

I have been to 13 doctors and spent thousands of dollars with no answers... doctors refuse to blame a drug that is "supposed to be out of your system after a few days of stopping ingestion".

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I am unable to put into words how drastically accutane changed my life. It literally destroyed the very aura of who I was. It completely changed my appearance, and I was not made aware of any of the side effects i now face, except depression, which i attribute to side effects not the drug itself. For me at least.. My hair thinned at 17 and never returned. I come from a family with thick, thick hair. My skin permanently thinned and my face became more pale. I experienced rectal bleeding.. And i recently found out that i now have celiac. With studies now pointing toward Accutane activating celiac, I have no doubt in my mind that it was caused from that drug. If you go to an endocrinologist for low vitamin d they will give you 50,000 IU vitamin D2 only once a week for fear of overdose. Accutane is like a mega dose of vitamin A taken every single day for 6 months. How in the world is this drug allowed. How are doctors so oblivious, so ignorant to all of the side effects. It is even worse when they tell you that it is impossible for a drug to affect you after you have been off for more than a year. So youre telling me it will permanently keep acne at bay, but it is impossible for anything else to occur after a year..... I hate accutane, and most all dermatologists.

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I took Accutane during my first year of college. Pre-accutane I was a straight A student. I graduated valedictorian of my class and literally never had to pick up a book at home to study. Since that time, I have struggled through college, failing two different levels of nursing school. I can't explain in words how different everything seems inside my mind since Accutane. Memory loss and lack of concentration have been a huge issue for me in Nursing School. I also lock my keys in my car and/or my apartment least twice a month, which had maybe happened once EVER before Vyvanse. I also suffer from major depression and mood swings. I have terrible night vision, and had perfect eyesight before. Pre-Accutane, I was a perfectly healthy child, rarely even getting a cold. Since Accutane, I have had numerous doctor visits. I had SEVERE tonsillitis, and two emergency surgeries for bleeds post-tonsillectomy. I also have bleeding/bruising/ clotting problems. Once, I even had up to 20 bruises on the back of each knee just from crossing my legs sitting in class. I also have frequent bloody stools. However, according to bloodwork, my platelets really arent that low. I also suffer from lower back pain. I don't know that my issues were caused by Accutane--all I know is that I haven't been the same since I took it. And yes, it's easy to say "wow, you're dumb for taking it after having to sign a consent form" and all of that, BUT I feel that sometimes dermatologists are misleading. I don't feel that my dermatologist tricked me on purpose or anything-- I truly believe that he honestly thought that the reports of depression/suicide attempts were just "coincidental." He used the example of someone eating m&ms and then committing suicide, saying that they could always blame that on the m&ms, but the suicide and the m&ms could easily have no connection. He also said that he thought that if anything, depression would be less likely since the lack of acne would boost my self-esteem. He was right--my self-esteem improved drastically at the time, BUT if I would've known the long-term effects, I feel certain that I would've reconsidered signing those consents. And as for my mom, she said she couldn't sign those consent forms, because she couldn't have that weighing on her later if something went wrong. She asked me to make the decision on my own. I'm not one to sue and maybe the whole thing is just a huge coincidence, but I think the decision is HUGE and should not be taken lightly. I've never even written on a public forum like this, but I feel strongly enough about the topic to throw in my "two cents."

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Toni- My LATE husband was on the original accutane when he was 15 years old. Within 4 months he developed symptoms of Crohn's disease. Turns out, it's been medically proven Accutane causes IBS, IBD, Crohn's and a few liver diseases. He was shortly after diagnosed with Crohn's and Primary Scolrosing Colongitis (rare liver disease). After 14 years of suffering with the side effects of both diseases, taking medication after medication and being listed on the liver transplant list he finally developed stage 3C Colon Cancer. He had a surgery to remove his colon, rectum and entire large intestine with a permanent bag of his own s*** attached to his stomach. The day after his surgery we found out I was pregnant with our second baby. 9months of chemo later we found out the cancer was back, EVERYWHERE! 5days later I was induced to make sure he would meet our second little boy. The day after we came home from the hospital I had to hire hospice to help me make my 28 year old husband comfortable while he was dying. He took his last breath 11 days after the birth of our second son. Toni, do you know what it's like to have to look at your 5 year old and tell him his dad, his best friend, is dead and never coming back? Do you know what it's like to be 26 years old and having to pick out your husbands casket 11 days after you just had a baby? Better yet, do you know how it feels to have to pick your husband up off the floor because he is too weak to support his own weight while having stitches holding your crotch together bc you LITERALLY just delivered a baby? Then after I buried the love of my life I find out the manufactures of accutane KNEW it caused Crohn's disease. Crohn's is what cause my 28 year old husbands cancer which in turn killed him. It was found in their computer systems that they knew! So yes, I'm suing the balls off the company bc now I have 2 little boys without a father and I became a widow at 26 years old!

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Hey Zac,

I know how difficult it is dealing with acne troubles. Tons of kids go through it at varying degrees. To deal with the cystic acne is tough, I did myself. Accutane cleared me well for the most part, but it came with a cost.

I've posted quite a few times on this thread recently. Feel free to go back and check what I have shared. This is really powerful stuff. I wasn't able to understand at the age of 19, so I don't expect you to realize how damaging this drug can be at 14. My honest advice, get off it. I've read accounts of younger teens having stunted growth linked to Accutane among other problems similar to what a lot of us experience after getting off of it.

I am 24 and feel like I'm walking dead (no pun intended) more than half of my waking hours. The soreness in my back and joints still exists 4 years after stopping the drug. If you're active or an athlete imagine the consequences it could have. Hell, even someone who isn't sporty or all that active will be hindered. You're a kid and I think it's something important to talk about with your parents. Make sure they are aware that it is a very potent drug, much more so than your doctor will even tell you. I can say in retrospect that it may not have been the best decision for me in the long run.

Try researching demodex and treatments or seeking a naturopath and alternative ways of treating persistent acne. I hope whatever you decide does not bring you any suffering, only happiness and improved well-being. Best wishes man.

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Shana, how old are you? 15? Someone that tries to make a point without bothering to type out the word “you” isn’t very convincing. You only report what doctors are sharing in regards to the “millions that take the miracle drug,” as Scott mentioned. Anyone that is so invested in western medicine and what perceived doctors tell you are in trouble down the road.

The drug can clear inflammation temporarily. While it may clear the acne for the most part, there is a strong chance any inflammation returns and worsens. I don’t know how long you have been off of the drug, but side effects can develop slowly over time. Vitamin A does not exit the body within a month, or whatever the doctors tell you. The toxic amount is stored in the liver and fat and can seriously affect people for years without natural treatments and detoxification.

To say these sufferers have no evidence is asinine. Not only is there plenty of documented scientific research (which you seem to value) about serious issues caused by the drug, the sheer fact that thousands develop the same symptoms and side effects is evidence enough. Only a fool would turn a blind eye. This drug can alter one’s body to the point of developing a multitude of disorders that western medicine doctors somehow have a difficult time identifying. Why would dermatologists curse their own drug when they profit so much off of it? Overall health is not in the big picture so long as a kid suffering with acne is temporarily happy and the money keeps coming.

Your reference to surgery is irrelevant, Shana. I am well-aware of the mental toll acne can take on any sufferer, but surgery is not applicable in this case seeing as one does not undergo surgical procedures to treat even the worst forms of acne. Acetaminophenis not even in the same spectrum as isotretinoin. It is used periodically. If someone suffers an allergic reaction, they seek treatment and cease use.

So before accusing others of being full of it about “common complaints,” I would personally suggest you do something better with your time, such as research and learn before proving only that you’re a full-on ignoramus. I wouldn’t wish these issues upon anyone, but I’m sure a week in some of our broken-down bodies would change your mind about a lot more than just one “miracle” drug.

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On April 25th, 2014, there will be a demonstration in both the United Kingdom and the United States in objection of the long-maintained denial of life altering and life ending adverse effects of isotretinoin.

The U.K. demonstration will take place at Roche's United Kingdom headquarters and will be attended by Derek Jones, the director of the "Dying for Clear Skin" documentary, who lost his son to this drug. Other families who lost loved ones and several victims of isotretinoin are also expected to attend.

The U.S. demonstration will take place at the FDA HQ in Silver Springs, Maryland. The main goals of the U.S. rally will be to:

- Make it be known that there are thousands, or potentially tens of thousands left suffering severe and persistent adverse-effects over the course of the drug’s 30 year history.

- Ask the FDA why isotretinoin is still being regularly prescribed off-label for moderate acne in light of the harsh nature of the drug.

- Push for further scientific investigation into isotretinoin’s full range of biological effects. "The methods of action are unknown" is not a valid excuse to continue denying a causal relationship to side effects.

- Demand the FDA to require manufactures to list persistent ED as a rare, but serious possible side-effect of isotretinoin.


If you wish to attend one of these rallies, and do not want to divulge the particular side effects you suffer from, you won't have to. Just showing up and showing your support will help a great deal. Feel free to bring friends or family. This will be a good opportunity to make a difference and finally meet others who are on the same boat. I will post updates regarding each respective rally as more information becomes available.

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I took accutane when I was 19 years old. I couldn't continue with the last months treatment because I was suffering from severe depression and suicidle thoughts. I am 24 years old now and suffer from low back pain, slight insomnia and dry lips. However, those are the only side effects I have suffered and i knew those things going into treatment. I live a very normal, healthy lifestyle and accutane gave me worlds of confidence! My heart goes out to those who are suffering from accutane.

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It has been 5 years since my sister and brother in law put me on this. My shoulder is always in pain even though i stretch and do yoga and exercise. It's always popping ans grinding. My stomach feels like i've eating the spiciest food and i always have blood in my stool even though i eat the best of best foods that i can afford. i never eat fast food. and yet i always feel like i'm dying. shortly have taking this med. about 6 months i stopped working out. completely. i lost all focus towards it. I lost my hair even though it's genetic in my family. i lost mine at 16... 16 i was balding when everyone in my family lost it in there 30s or 40s. if you see all these reviews and choose you take it. you're destroying yourself.

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Dr. Steve,

Have a look through the following literature, scoff at the authors and their opinions, then look through the citations. No need to waste precious space here posting every peer-reviewed study, case report, or statistical analysis cited in the articles provided.

V. P. Kontaxakis, D. Skourides, P. Ferentinos, B. J. Havaki-Kontaxaki, and G. N. Papadimitriou, “Isotretinoin and psychopathology: a review,” Annals of General Psychiatry, vol. 8, p. 2, 2009.

J. D. Bremner, K. Shearer, and P. McCaffery, “Retinoic Acid and Affective Disorders: The Evidence for an Association,” The Journal of Clinical Psychiatry, vol. 73, no. 1, p. 37, Jan. 2012.
(Granted, this article likely contains a biased opinion, but the cases of recurrence of psychiatric symptoms upon rechallenge cited in the paper provide extremely strong evidence that Accutane was to blame for these patients.)

B. C. Melnik, “Isotretinoin and FoxO1,” Dermato-endocrinology, vol. 3, no. 3, p. 141, Sep. 2011.
(includes extensive review of much of the raw science)

Do you feel it is safe to give teenagers a drug that effects the sertogenic and dopaminergic systems, growth hormone, pituitary hormone, insulin, and sex hormone physiology, or one that induces functional brain changes or infertility in rats and dogs respectively?

Keep your statistics. You seem to be missing the point. It's about severity, not necessarily frequency, to the extreme cases where former isotretinoin patients have accepted suicide as the only way to escape side effects.

Why are we so loud? We're trying to prevent others from going through the same hell we are living after taking Accutane.

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I was sixteen, I signed a form. No warnings, no list of side effects. The doctor promised my mum it was a miracle drug. In the late 1990's we didn't web md. Good for you that you got to make an informed decision. Many of us didn't. Grow up

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Hi its Rachel again. I am having these symtoms: coughing, naseau and pain in my shoulders, neck was severe at some point now just still. Had some excrutiating pain in my thighs and now I have heavy legs trouble walking and extreme fatigue. I do have stomach pains sometimes but I have normal you know. All this happened within the last three months. All I can do is sleep on a heating pad and just pray I get better. I saw a neurologist who feels I have fibromyalgia now I have an upcoming appt with a rheumotologist. My life if ruined, I can hardly to anything. I used to be a runner. My question is I took accutane 6 years ago. Could this just come up like this now? Rachel

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Hi Wil I am sorry to hear what you are going through. I am having trouble walking and I have appointments to see doctors next week. This drug just should never have been allowed.

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My daughter was on accutane for a year in 2008 and now is disabled. She is 21 and has severe joint and muscle pain and swelling, rashes, iritis, fatigue, at times neuropathy.

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I have the same question. My 17 y.o. started Accutane and just finished day six. Dr. started him at 80 mg/day which pharmacist said "seems a little high". By day four he had the flaking skin, scalp dry lips and glazed looking eyes. By day five his eyes were both pink. We had read all the literature and assumed these were "normal" side effects that we were willing to take on /endure. By chance, my son had an eye appt. today - routine - no eye problems - it had just been a long time and thought we should get his eyes examined during summer break. Dr. said he has cataracts in both eyes and said he would stop Accutane immediately; that my son was not a good candidate for it. I am so grateful we had that appt. today - otherwise, we would have continued with the Accutane, not even knowing the risk re: exacerbating cataracts... Eye Dr. said he'd "never seen anything like it". He wants to see my son in another 3 months. Said there is probably a congenital reason, but he would not take a chance with Accutane. I called the dermatologists office and only got to speak with an assistant who said the Dr. told her that my son "would not be experiencing any side effects this early after only 6 days on generic Accutane". BUT... no apology or concern shown at all that there is published info re: accutane and cataracts. We were not aware of this at all. The assistant said the Dr. would call us - we never heard a peep from her. So, now I'm wondering just how it will take to get this poison out of my son's system as well... He is handling this so well - He is so tired of the cysts/acne, but agreed that taking Accutane just isn't worth it... Not from all that we've read (and yet the dermatologist pushed and pushed for it, telling us how she even put her own son on it... Well, good for her. I'd rather love my sweet boy as he is with a face full of acne than know his health is in jeopardy or that he may have life-long side effects from this drug. WHY are they even allowed to prescribe this???

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I would not recommend putting my child on Accutane at all... ever... period. READ all you can on this drug. READ what others have posted. I put my son, 17, on Accutane without knowing all the facts, side effects. Make sure your daughter has a good eye exam before going on Accutane if you decide to do it. We found out my son has cataracts and Accutane exacerbated them. The accutane stint was brief, but the damage has lasted for months. Terrible scarring as a result of going on Accutane. My son has said he'd rather live with acne than take this drug. The side effects and long term effects (known and unknown, it seems) just aren't worth it. I feel for your daughter and the acne, but this drug option just isn't worth the potential risks. It is poison. Period. My son went back to taking anti-biotics after Accutane and has now even stopped taking those. He is using tea tree oil and his face has been in the best shape it's been now, although the purple scarring from the initial Accutane outbreak is horrific. We hope to treat that with laser treatments in a year. Every dermatologist we've contacted push push pushes Accutane... it makes me sick. I chew myself out every time I think about agreeing to allow my son to take that drug. My advice: Don't allow your daughter to take it. It may clear her skin up, but the long term effects aren't worth it. We place far too much emphasis on looks as it is. Her health and continued health in the future is what should be a priority. Just my two bits. This drug should NOT be allowed.

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