Accutane Long Term Side Effects (Page 80)

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 After I have researched this drug extensively, I can't believe that the FDA allows this drug originally made for cancer patients to be marketed for teenagers with acne.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

I am 23 years old. My dermatologist introduced acutane to me to clear up my stubborn acne that always seemed to come back since the age of 16. Although some people do very well on acutane, let me just say I did not. I lasted a month on accutane until I ended up in the hospital with acute pancreatitis, as well as an inflamed colon. My gastro doctor immediately knew it was the acutane once I told him I was on it. I was in the hospital for a week in the worst pain I have ever felt. I now suffer from digestion problems & there are many things I can no longer eat. Acutane is not worth the consequences you may encounter!

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I was treated w/Isotretinoin 5 different times. 60 mg/day for 6 months each round. I had to keep switching dermatology Drs. b/c none of them felt comfotable prescribing it to me more than once. BUT IT WORKED so I did whatever it took to have clear skin and stop my face from scarring even more.

During treatment, the only bad side effects I had were dry skin and chapped lips. Depression too, but that may have been due to other factors. Now, years later I am experiencing extreme lower back pain way too debilitating for my age (25). And, my acne is back. It always came back, but this time I can't just go fix it again with Accutane. I'm afraid the side effects have finally caught up with me and I'm terrified.

If I can give any advice, try it once. It really is a miracle drug, but don't be stupid like me. If your ance comes back, don't put the rest of your body at risk again. It's not worth it.

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Hi Im Vietnamese. I tool this medicine for abt 4 months. Then my lips are so dried andhad problem then I stopped using it. After 1 week, my face is growing more and more small pimples destroying my face. Before taking Isotretionin, my face just grew some pimples near my pms. Now pimples still grow and Im very stressed down.

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My son Died died at 27 from liver failure, 2 years ago. He was taking Tylenol and drinking vodka but not enough to kill. Once you have alcohol in your system they treat you like an alcoholic and you have to wait 6 months before getting On The transplant list...he took accutane when he wa 16... I feel like it destroyed his liver along w/the acetamenaphine!

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Sorry, but you shoudn't give such a bad advice. It is not worth of trying. As some other people have explained, once is enough to destroy your life. I have chronical lower back pain and joint pain and I only took this damned drug once. It was enough to destroy my health, perhaps forever.

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Have her thyroid, b12,sugar, Vit D levels checked!

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Iv'e been taking Accutane/Roaccutane for 6 weeks (after trying everything else the medical profession has thrown at me over the years) and the middle finger on my right hand has swelled to double its normal size. I stopped taking it 3 days ago and its already beginning to become less painful and return to normal size, my lips are getting less dry, skin less red and muscles less sore (plus unfortunately first spots I've had in the 6 weeks, I can't deny it's not good sorting that). I think i'll have to either live with acne or maybe look into UV treatment or something. As I only get it on my back, I think the side effects are worse than the condition. The dermatologist really didn't clue me in on all of the side effects beforehand either......

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Mandy, my 24 yr old daughter has been on accutane for 5 months and her doctor wanted her to continue for one more month. She suddenly last week developed severe joint and back pain. When she called his office and spoke to his nurse about her symptoms, he got on the phone and told to stop the Accurane immediately. I only pray that her side effects aren't permanent.

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The information is just now become available. I took Accutane in it's experimental stage; and now regret it. I have severe problems with pain, gastrointestinal and fatigue so bad, it is hard to do things. There was no information available at the time I took it. Don't judge people for wanting to try and help their kids by believing in a doctors advice. There were many suspicions about this drug 20 years after it came out, but nothing was out there because the legal suits and drug companies wouldn't allow it. I would not and have not given my child, who also suffers from acne, this medication now that I know what it does.

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I don't like to be the bearer of bad tidings or gloom and doom but, I must tell everyone reading this that the long term side effects from Accutane poisoning don't go away. They just get worse with time. I can testify to that after taking this drug/ poison over 30 years ago as a young man of 24 at the time. I took this poison for a total time of 3 months. I started a second round of treatment which lasted for about 2 weeks at which time I decided that the short term side effects(severe nose bleeds) were just not worth it. Thank God I didn't continue the treatment! I would probably be dead by now if I had. I only wish that I had NEVER heard of this poison! My life has been a struggle for the past 30 years post Accutane treatment with all kinds of health issues. My health problems started during and continued after stopping the drug. I've had bone and joint problems, pain and degenerative disc disease, which have progressively gotten worse over the years. I battled depression after the treatment accompanied by weight loss. I've had GI problems including ulcers, IBS, acid reflux, hiatial hernia. I developed food sensitivities to things I ate in the past with no problems. Accutane has affected my ability to concentrate/ focus on things in my thought process. Writing this stuff now is taking me forever to gather my thoughts. It's a struggle. Sometimes I feel more alert at thinking but most of the time it's hard for me. It's like I'm in a fog. I never feel really rested and energized after sleeping like I should/ used to. I miss that so much. It seems that the last couple of years the Accutane side effects have gotten alot worse. On a typical day for me after I get out of bed, I shower and get ready for work. I have to look at myself in the mirror to shave of course. I see my red face in the mirror and the way my eyes are sinking back in my head. That's the "hollow" look that I've heard that Accutane users develop. It's true. I know personally. So my face is red and all around my eyes is kinda white like a raccoon. I look at myself and am self conscious of my appearance. I go to work and people ask me if I have been in the sun. No. They tell me I look tired and do I feel alright? I get alot of doubletakes (second looks) from people. I know what they are thinking. I wish I had my acne back now. It wasn't nearly as bad as this! I have developed gluten intolerance in the last year. Now I have more limitations on my already complicated life. I'm 54 years old and have never been married. And why? because the last 30 years of my life have been dealing with the results of a terrible decision on my part to take Accutane. Basically, I have lost the last 30 years of my life. I lost my youth and health to some drug company's greed to make money off people that are dealing with the issue of teenage acne. Young people that are at a vulnerable time in their lives making decisions that will affect their future. I hope anyone that is thinking about using this poison changes their mind after reading this. You need to just suck it up and tough it out. Acne usually goes away with age. I know there may be a few exceptions to this but, not many. Don't take this drug!!

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There is 30 years of study of this drug. Why don't you go on pubmed and read some real research studies. these are much more valuable than peoples individual stories on the Internet the internet. Let's face it this drug has such a bad reputation people are going to blame all their subsequent health problems on them.. This type of anecdotal information is of poor quality compared to the dozens and dozens studies on this drug. If it was dangerous it would be pulled from the market. It is approved for used all over the world we have plenty of data supporting it's safety.

Accutane patients are my most satisfied patients. I have to say that's dermatologist many of them prescribe this drug in doses that are too high because they haven't done the same research that I have and this is responsible for some the side effects people are experiencing. in general and dermatology people regard this drug excellent drug a wonderful drug and they do this because they read the studies and have had good experiences with her patients . You may want to consider that the nothing experts might actually be right right. Seriously go to PubMed and read some real studies you'll be surprised on how safe and effective this medication is

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Yes BUT doctor Steve I am sure you are aware as I am,having worked with researchers and scientists who have done drug studies(not on roaccutane but others) that a lot of the 'evidence' reported is falsified! Drug companies and other 'professionals' push scientists or sometimes may not even have to push them..to report the results they want to see-that their drug is totally safe effective and amazing,I met a couple of researchers who left their jobs because of this,the company will only keep your contract running if you give them the results they want so what you are saying doesn't hold up for us who have suffered for years at the mercy of this drug-yes it works-very well but it ruins your body and mind in the process..

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God forbid anyone read the pubmed articles concerning Accutane/isotertinoin that were originally published OUTSIDE of dermatology journals. No rational person would take this drug if they could make sense of half of the basic scientific research. ...There is enough literature with negative implications to fill an entire page of this thread with links if they were allowed here.

Dr. Steve, I truly hope you do the right thing and file a MedWatch report when a patient complains of symptoms developed while taking Accutane, rather than convincing them it absolutely must be something else causing them.

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No field is without bias and there is a certain amount of truth to what you say. This is why I am hesitant to prescribe a drug when it first comes out because the few studies that there are are funded by drug companies and usually contain some bias as you described. However keep in mind if they put out a drug that really doesn't work or is dangerous, it is a multibillion dollar disaster (ex: Viox) However accutane is long passed that phase. There are hundreds of studies from around the world most not funded by the drug companies wit no conflict of interest disclosures whatsoever.. Let's say that all american research is corrupt and biased most studies I have read come from other places around the world. This drug has never been pulled off the marked by the FDA of ANY COUNTRY

I rarely give anyone over 40 mg. As I see from the posts and I see in practice most people go for the maximum dose with a "go big or go home mentality" which I believe is the wrong way to go. In Europe they use lower doses than in the USA and there is not this focus on total clearance and dam the short term side effects".

Honesty, in 9 years I have not met one former accutane patients with experiences like you guys have. And I ask! I want to know! I have many parents who have take the drug who come in with their kids who have acne or they mention that a relative took it and I ask what their experience was. I always ask, what was your experience. In all this time I have had one patient who said their son hand a psychotic break and had to be hospitalized. That's it in 9 years of asking about peoples experience and long term side effects. The research I've read is in line with this.

I'm struggling to understand the disconnect between what I see, what my colleagues see, what the dermatology profession and all the research says and the torrent of horror stories on this website. It's like we are living in different universes! Does anyone have an explanation?? Is it just the magic of the internet and that a small minority of patients can have such a loud and visible voice? I'm sorry to anyone what was hurt by this medication but all measures of reality indicate that the horror stories are an extremely small percentage of total users.

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I would love to see some of the studies you refer to that were published outside the dermatology journals. Please post some links. I am always interested in learning more. I'm sure they are not peer reviewed, so it is just one persons opinion but still post some links and I am happy to see them. You and the other person who responded to my post obviously don't trust and establishment. I'm open minded. The more information the better. Looking forward to seeing your sources.

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Hi dr. Steve. My face before accutane was ok, just have some pimples here and there. But my derm still put me on accutane. That time I didnt know what it is. I took it for 4 month with the dosage of 20mg then 40mg everyday. Then I stopped using it. After 2 weeks, my face grew so many small pimples, they are red and tiny. Now they left so many dark spots and some scars on my face. I think accutane is ruining my skin.

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There is a number of skin problems that resemble acne that is not acne. Highly unusual to have an acne outbreak so soon. I would schedule a follow up, if you don't like your current derm get a second opinion. Without knowing your weight (dosing is weight based) it is hard to say but your treatment course is short (usually 4-6 months). If you didn't take the medication with food (preferably with a decent amount of fat) you may have absorbed little which could theoretically be responsible for your breakout, it you are truly having one and not some other skin problem that looks similiar.

I'm curious, you say, " But my derm still put me on accutane. That time I didn't know what it is" I hear this alot. The phrasing of this decision process indicates no choice was offered, little education was done. I envision the doctor saying this is what I recommend and offering no choices which is seems like there was in your case if your acne was only moderate. Doctors are notoriasly poor communicatiors in my opinion. Would you mind sharing what your experience with this doctor was like as far as how he framed this decision with you etc.

Thanks

Dr. Steve

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Hi. My skin just had some pimples near my pms only. First time I came to her clinic, no pimples on my face.i just asked her to look at my face whether it has problem. Then first she gave me a tube , asked me to apply on face. My face turned red and dry. One more month, it grew many pimples but actually to me it was ok. I came to her again, she looked atmy face, and she just wrote the medicine, and said no pregnance during medicine without any instruction, blood test or anything. She just kept silent to me. Then i used it for 4 months, she just stop accutane and change to another med. i was angry becoz she didnt sayanything, just kept silent. During using the accutane, my skin is very perfect, no any breakouts during it. But after stopping accutane, my face breakout so many, iI cried many days and Im crying now. Why I seek to her clinic then now it ruins myface skin. Now I want to seek for another derm or go backto complain her, but I really lost trustin doctor. What I should do now? If you want to see my face. Dont hesitate to email me {edited for privacy}.

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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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Thank you for the information Bill. Always looking for new information. I would argue that frequency has to be in the picture. If only 1 in 50000 people have a certain severe side effect should we deny that medication to everyone or just do our best to diagnose this rare side effect. It is a questions of balance. Isotretinoin is what I consider to be a "higher level" drug much like methotrexate, prednisone, Enbrel etc as it has potential for wide-ranging side effects and needs monitoring. The difference in drugs being therapeutic or a poison is dosage. Most side effects are dose dependent. In my opinion dermatologists jump to the maximum of 1mg/kg way too much causing unnecessary side effect with only marginal benefit. I feel a better balance of effectiveness and side effects is.5 mg/kg or 30-40 mg for a 150 lb person. As far as suicide and depression goes, people with severe acne are at much higher risk of suicide and depression than the general population. Really nothing else works well for severe acne. Should we deny these patients relief if the frequency of a side effect is deemed to be extremely low? If you had to treat these desperate suffering patients every day you may have a different perspective.

Thanks again Bill. May take me a month or so to get to reading these studies but I really appreciate it. I don't search under pub-med specifically for only dermatology journals but that is what always comes up first for any derm subject matter

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