Accutane Long Term Side Effects

Updated

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 After I have researched this drug extensively, I can't believe that the FDA allows this drug originally made for cancer patients to be marketed for teenagers with acne.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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1

I sympathize with you on the accutane. Even my neurology doctor has told me how the fda works and quite frankly it is pretty scary. If his stories are true than the fda is hand in hand with the drug companies and not the poor consumer. But back to the accutane. It has really changed my son's life but not the way it has affected yours. My son has had other accutane problems. I am not the type of person to sue and am a registered nurse but i want this to stop before too many more children are hurt. Here is our story. My son was on accutane for one year and it stopped his growth and fused his bones. I know this for a fact and could prove it. My son had wrist xrays to tell his bone age about 3 months before starting on accutane. The xrays showed that he had 3-5 years of more growing based on the bones not being fused. He went on accutane and after about a year or so i realized that he was not growing. we went back to the doctor and they did more xrays on his wrists. I was shocked to find that his bones had fused over the year he was on accutane and he would not grow anymore. I remembered signing a release on the accutane related to bone problems but it never said that it outright stunt your childs growth permamently. I would never had allowed my son to be on it if i knew it would do this to him. My son is now 19 years old and is 5 ft 3 inches. My husband is 5 10 and i am 5 5. His siblings are much taller than him. When he was a baby his growth chart showed him at 5 ft 8 inches. It breaks my heart to see what it has done to him. I am sorry if I offend any one who is short but my son would not be soo short if it had not been for the medication. I am sorry about all of the kids on accutane that have suffered in one way or another.

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2

I took Accutane when i was 15 yrs old...I had my first back surgery when I was 20...my second when I was 23..niether of these surgeries was caused by a specific accident I just woke up one day and got out of bed and my back gave out....I also have very bad stomach problems I take 40mg of nexium and 300mg of zantac daily or my indigestion gets so bad I can't stand it...I have been scooped from both ends and lots of blood tests and the doctors cannot explain stomach at all...I'm not sure if this is a side effect or not...Is anyone else out there having stomach problems due to accutane? I'm in constant pain in all my joints especially my back, shoulders and wrists. I am now 33 and take about 1600mg of motrin just to get thru the pain of everyday life.

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3

Dennis,
I am sorry to hear about your health situation. Have you mentioned to your Gastroenterologist that you were prescribed accutane at 15 years old ? Accutane has been proven in a court of law to cause Irritable Bowel Disease. If you would like, email me at Scottp623[at]aol[dot]com and I would be glad to send you some information I have collected. My son seems to have some of the constant pain in his joints, also in his shoulders, both wrist and right hand that you have. Have you had a bone scan done ? Please email me. You are in my thoughts and prayers. I was amazed once I started researching this medication on how many others are out there with similar health problems after taking accutane. I will be looking for your email. Best Wishes !

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4

The problem with any medical issue and blaming it on a drug is, of course, actually proving that the drug caused it. This will not be an easy nor cheap process.

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5

Im supposed to start taking accutance in 2 weeks..i know 5 people who have been on it and are fine..but it hasnt been years later..now im starting to think if im making the biggest mistake of my life..

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6

Mandie,
Please remember that I am not a doctor and I am only giving you my own personal advise. Even though you know 5 people that have taken accutane doesn't mean that the next person that takes it will not be one of many who have long term side effects from this medication. My son has seen over 5 doctors and each doctor has a different answer to what he has. As of yesterday, a specialist told him he may have spondyloarthritis and has scheduled him for two different MRI's and a colonoscopy. Please continue to read more about this drug before you decide to take it. There are now many other options for acne than this medication. Maybe by trying some other over the counter meds might help you. Google the top ten acne products and try one first, maybe it will help.Good Luck !

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7

My brother, his 2 twin friends, a friend of mine, and myself all took Accutane once for 6 months, and all of us are doing great. My brother and his 2 friends took it about 4 years ago, and my friend and I were on it 10 years ago. None of us have suffered from any side effects or conditions.

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8

I had urticaria(dermographism) at the mid of the third month while taking accutane and still have after 3 months from stopping it, i feel itchy every night and have horrible hives and welts when ever i scratch my skin even smoothly

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9

I was put on Accutane when I was 25 and had my final dose in 2008. A year later and I'm experiencing problems and symptoms I never have before. Like Dennis, I have severe stomach problems including cramping, bloating, pain, etc, and earlier this year I was diagnosed with IBS by a gastroenterologist.

I don't have joint pains fortunately, but I suffer from insomnia and drastic mood swings. I constantly lack energy and my concentration has completely gone off the boil.

The acne cleared up, but I have permanent red marks all over my arms and back that were never there before. I was told oh, those are fine, they'll clear up eventually, but one year later they are as prominent as they were before. I have rashes along my forearms. Additionally, my face is always dry, I become very flushed and sunburnt easily, and I developed scarring toward the end of treatment when the acne was supposed to be clearing up.

The worst thing is I told my dermatologist all of this, but was informed that those aren't his area of expertise and I should see another specialist about those problems. He knew the drug was causing these illnesses but he shunted me off onto other practitioners once he got his fee. Essentially, he didn't give a s***.

I would caution anybody about to go onto accutane or any of its variants to research and assess this drug beforehand. Weigh up the severity of your acne and your self-esteem against the intended benefits, but be certain that you're willing to pay another price in the long-run. The choice is ultimately yours, but if you are being prescribed accutane and there is no other option than living with low self-image, it's important to realize that you've been let down - by your medical practitioner, your support network and/or by life.

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10

I was going to start accutane next week. After reading these posts, I have decided against it. My thanks (and sympathy) go out to all who have shared their stories!!

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11

i took accutane when i was in high school. up until now i feel like accutane worked great for me. i am now 25 years old. at the time of taking the medication i had all of the dryness, chapped lips, very pale and easily burnt skin. i also had to constantly get blood work done. at this time i am currently losing hair. hair loss is not in my family. i was wondering if there were long term side effects of this drug that causes that. or could it be the side effects finally catching up to me now. and could i do anything to help my case.

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12

Considering starting accutane for my daughter, age 14. Very concerned about the effects, especially since she is a very young girl whose body is not fully developed. We are currently trying a run of Yaz for 5 months now, and monthly dose of a Z pac. Also tried a herbal remedy. Seems like she has gone from stage 4 to stage 2 or less... Not sure but I have had a 2 different Diagnosis from 2 different Md's this week< The derm said cystic 2, the plastic surgeon (seen for scar removal) said chronic acne. After reading all of your posts, I am not sure to start her on accutane or not, esp since the 2 diagnosis were so different in one week.
I am a Registered Nurse and I understand the complications of todays medicine and their side effects. It is unfortunate that her acne has taken her from a year round great swimmer to sitting home inside all summer and not going to any pool.
However, I am going to consider delaying the accutane initiation.
My prayers and thoughts are with all of you who are dealing with the life changes from acne and the treatment courses out there.

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13

My sister-in-law passed away last year of stomach and liver cancer. She was on accutane for a long term. I believe her immune system was compromised by accutance and eventually caused her cancer. Are any attorneys handling cases of this such.

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14

I suffered from acne in my 30's and took the antibiotic Minocin for years. It worked fairly well. My doctor asked me if I wanted to try Accutane to clear up my acne for good. I used the drug for the medically prescribed time in 1997. It cleared up my acne and it never returned. Ten years later, I am suffering from chronic pain syndrome - arthritis type symtoms in my back and neck. I also have inflammation in my S.I. joints that can't be explained. I now take an anti-inflammatory drug called Mobic and use a muscle relaxant called Skelaxin. Every day is a struggle with pain. I've always wondered if taking Accutane is the cause of my illness. I am 48 years old now and barely able to work full-time. I would not risk taking this powerful drug and recommend alternative treatments.

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15

Dear Lynn M.,
I read your post about considering getting accutane prescribed for your daughter. I only speak from the horrific side effects this drug has done to my now 19 year old. My son was a star track and football player and took accutane while he was doing both sports when he was 15. Since then, he has been unable to even swim in school and we have to get him an excuse every year because the chlorine in the water cased his face to turn cherry red and become extremely dried out from the medication. Your daughter may get her complexion better, but may suffer the consequences of never being able to swim in chlorinated water again. Unfortunately, my son also never again participated in any High School sports since taking accutane do to major joint pain and now has arthritis in both shoulders, both wrist and right hand. Thats only a few health concerns we have today from a decision a doctor made. Who in their right mind would prescribe a cancer killing drug to their child to clear up acne, if they only were told that up front. It's a decision I let happen 3 years ago that haunts me everyday.

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16

Hell is where I have been living since taking Accutane years ago. I was perfectly fine for a year after taking it with just some slightly dry lips and skin and then my health went straight down. I mostly live the life of a vegetable now, unable to participate in most activities because of chronic pain, lung problems, gastric problems, chronic fatigue. Accutane will reduce your capacity to enjoy life and creates a depression that is unlike any other.

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17

Accutane is poison...Don't take it....It almost killed me, I couldn't walk for 4 months. I have severe osteopenia high fx risk, I shrunk a 1 1/2, I have thyroid problems now, major tendon,ligament,joint damage, it burnt my eyelids which are now constantly dry and swollen, along with dry eyes,mouth and body,I now have ear infections (30yrs and never had one), Accutane gives a whole new meaning to anorexia, I lost all muscle and fat on my body and massive amt of weight...It took months to regain just some of this and to top it off I am swollen behind my right side of the head...mri and mra shows nothing....No Doctor Cared about any of this stuff just shrugged thier shoulders as well theese things happen.....
I think really hard before you put this chemo drug in your body...I wish someone would of warned me, told me what this poison was...
Don't Do It there are safer alternatives.........

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18

I have had reoccurring stomach problems for years now. Looking back I believe it to be the accutanethat did this. I took accutane my sophmore year in high school into my jr year, then starting at the end of my senior year i started getting stomach problems, a weird cold pain/discompfort. For a while it was bearable so i ignored it but soon i found myself in the hospital with an innersuccepted bowel. Wich means my intestines basically kinked in on itself. they cut my open to repair my intestine but it was fine when they went in so i basically had a major stomach surgery for no reason. I have had over a year of testing and doctors and no none can explain what happened or what is wrong. I lost 30 lbs from the surgery and it took me over a year to gain it back. i have been having a problem gaining weight, and also a big problem sleeping at night. i find myself tired all the time, even after i slept for over 12 hours(which most of the time is during the day when i shouldnt be asleep). After researching on the internet i believe accutane is to blame for my problems. I basically live with this pain every day now because after years of no answers people are tired of looking for answers and hearing me complain. Some one needs to do something about the distribution of accutane to teens before more people end up like me!

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19

WOW! all you people who took accutane and have all these side effects in the future...guess what they tell you that before you start taking it!! I took accutane knowing about the long term side effects and yeah there were side effects that the doctor told me would happen and its not like you can't read up about the stuff on the internet if you cared about your children you should have researched the effects of accutane BEFORE you let your kid take it thats what my mom did and she left the decision up to me. You should look up every medication you take that has any kind of side effects.

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20

15 yr old son on Claravis(isotretinoin) for 12 days. Paranoid behavior started at day 10 and contuned to worsen. Now on Day 7 off the Claravis and we continue to wait for this drug to clear his system. He is experiencing extreme delusions, paranoid behavior, anorexia. Behavior was a perfectly adjusted 15 year old before starting this medication. I cant find much help locally of anyone ever expirencing this behavior. I have heard anywhere from 3 to 20 days to clear brain receptors.

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1933

Re: Adele (# 760) Expand Referenced Message

Very common. They claim it is "coincidental". I am SO sorry. It is pure posion.

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1932

Re: Joy (# 758) Expand Referenced Message

Dead thread I know... But only the Brand Name Accutane was taken off the market (due to lawsuits), but Isotretinoin and other generics are still on the market.

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1931

To anyone still reading this... I am a male who has undergone isotretinoin treatment 4 times throughout the ages 15-23. I spent 20 months on the drug in total. My dose never exceeded 40mg/day (roughly 60kg bodyweight). Despite 4 courses of isotretinoin, I still get acne around my jawline, common of hormonal acne. After digging around, I found this study: ncbi.nlm.nih.gov/pubmed/9740865, which links unsuccessful treatment to hyperandrogenism. Which makes sense, because I was able to gain 10kg of lean muscle undeterred by isotretinoin. Point being, if you think the cause of your acne is hormonal, I would not risk the chance of life-altering side effects for clear skin that likely won't last.

To dive further, it has been about a year since I last took my last pill of isotretinoin. I was lucky enough to not sustain any long-lasting physical side effects mentioned. I have no dry eyes, mouth, or joint pain. Although I do look much older than my age. This is all conjecture, but I am positive that a strong hormonal profile buffers against the physical side effects of this drug, as suggested by the study above. Although, it will not buffer against the mental side effects.

To preface this, I have a family history of schizophrenia. My uncle is a severe schizophrenic incapable of communication or caring for himself. After more digging, I found this study: nature.com/articles/s41380-018-0305-0, which links disruption of retinoic acid signaling to the neuropathology of schizophrenia. Now this is going to sound crazy, but read this with an open mind. I have reasons to believe that isotretinoin indirectly causes symptoms of schizophrenia to manifest in those who are susceptible. And that the people who experience depression, anxiety, psychosis, and/or suicidal thoughts while on this drug are actually suffering from a form of schizophrenia. My reasoning is this: it is well established that isotretinoin can trigger suicidal thoughts, major depression, and psychosis in otherwise healthy people. As hypothesized in the study above, genes involved in retinoid signaling/biogenesis are thought to be implicated in schizophrenia and psychotic-like symptoms. Next, we have this study: ncbi.nlm.nih.gov/pubmed/25721216, which shows that isotretinoin affects the hormonal output of the pituitary gland at any supra-physiological dose.

It is also worth noting the case study of the Inuits, who consume polar bear liver to survive in the frigid arctic. Polar bear liver is thought to contain something like 1000 times more vitamin A than domesticated ruminant animal livers. Upon consumption, the Inuits suffered psychotic-like symptoms as described in this study:

journals.lww.com/americantherapeutics/Abstract/2004/11000/Polar_Hysteria__An_Expression_of_Hypervitaminosis.15.aspx.

Here comes the crazy part. For those who have never heard about the 'pheromone theory of schizophrenia', it was one of the first theories attempting to explain schizophrenia from the 20th century. Basically, it's the idea that individuals afflicted with schizophrenia begin to smell unpleasant. And the people around you pick up on the smell and distance themselves from you. So you begin to think something is wrong with you, because everyone is avoidant of you. Which turns into a downward spiral, further accentuating isolation until you become a full blown schizophrenic. There is evidence to back this up: https:/­/­www.ncbi.nlm.nih.gov/­pubmed/­17156856.

Putting it all together, isotretinoin disrupts your endocrine system via the output of the hormones from the pituitary gland. With repeated chronic exposure, your endocrine system eventually becomes so damaged that your hormonal/pheromonal production is perturbed. Other humans can sense this perturbation innately, and you are cast out of the tribe.

The sad part is, no one knows if it is possible to recover completely from the harm isotretinoin causes. This study: researchgate.net/publication/26271506_Epigenetic_side-effects_of_common_pharmaceuticals_A_potential_new_field_in_medicine_and_pharmacology, suggests that the changes are epigenetic and become permanent with repeated exposure.

Upon researching how to heal the body from isotretinoin, I have come to the conclusion that drastic times call for drastic measures. Individuals who have suffered any long term side effects need to transition to a raw carnivore diet EXCLUDING as many grains and vegetables as possible. You must avoid gluten at all cost. Cucumbers and fruits are fine though. The reason behind this is that isotretinoin alone has likely compromised your intestinal health to the point where you don't want gluten and anti-nutrients from vegetables punching more holes in your gut. This study explains the gluten issue succinctly: ncbi.nlm.nih.gov/pmc/articles/PMC4809873.

Referring to the issue with vegetables, most of them on grocery store shelves are genetically modified and otherwise would not be edible in nature. Thus, they are not part of a natural human diet. Here is a great example: sciencealert.com/fruits-vegetables-before-domestication-photos-genetically-modified-food-natural. If you were put these in your mouth, your senses would quickly tell you to spit them out. There is nothing in plants that you can't get from meat. If you're thinking, "but wait, what about anti-oxidants!?", you've been successfully brainwashed. This article puts it nicely: pesticidefacts.org/perspectives/dietary-pesticides-99-99-percent-natural. The anti-oxidants found in plants are NOT there to make you healthy, they are there to defend the plant from predators who would dare eat them. Biochemical defense because the plant cannot get up on two feet and run away from predators like you can. The only true anti-oxidants are taurine, carnitine, carnosine, creatine, coenzyme Q10, vitamin B12, and conjugated linoleic acids, all of which are missing in the vegan diet.

You need to source meat and dairy from a trusted local farm, as grocery store meat is contaminated with antiobiotic resistant super bugs (beckershospitalreview.com/quality/most-grocery-store-meat-contains-antibiotic-resistant-bacteria-4-things-to-know.html).

To summarize, stay far away from isotretinoin if you truly value your longevity and well-being. Isotretinoin treatment resembles controlled hypervitaminosis A, which is the anti-thesis to proper mental health. As such, isotretinoin treatment must only be considered as an extreme last resort.

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1930

If his immune system is attacking itself then he has autoimmune. Especially with all the pain in joints and all. Rheumologist ASAP!

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1929

Re: Dennis (# 2) Expand Referenced Message

The motrin is probably causing the stomach problemsz

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1928

No more comments in 2019?

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1927

I would go back to the doctor that prescribed it to your son with all the information that you have gathered and show him so that he can wake the hell up to the dangers this drug presents . It should never have received FDA approval

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1926

Re: NCC (# 202) Expand Referenced Message

Can accutane cause a rise in IOP or glaucoma? I took accutane (Isotretinoin) for almost one and a half year. I am told that I have OHT.

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1925

Hola lamento mucho lo que le paso señora io también tomé ese medicamento por 4 meses y me salio sangre.. Usted consiguió alguna forma de parar las secuelas d ese medicamento? Este es mi correo. {edited for privacy}

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1924

I took accutane in my 30’s because I had very oily skin and acne. How I wish I hadn’t, sure it cured my acne, but I’m now 70 and suffer all day every day from dry skin, my wife calls me itch and scratchy. I moisturize, I drink flax oil, but I’m plagued by dry skin, sometimes it’s so itchy that I scratch in my sleep until it bleeds. I wish that I had never taken this stuff. I would gladly suffer acne to have normal skin so to anyone thinking of going on this drug be very very wary of its side effects. They are horrible and permanent.

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