Accutane Long Term Side Effects (Page 15) (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 After I have researched this drug extensively, I can't believe that the FDA allows this drug originally made for cancer patients to be marketed for teenagers with acne.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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bro needs help,

I was just stating what I have seen in the comment sections on the stories about Accutane. Yes I had side effects like dryness and joint pain but they were temporary. You should also look up what severe skin diseases like severe acne can do to a persons self esteem and social life. If you experienced being relentlessly bullied in school due to severe acne, not having any confidence at all, avoiding social activities, not being able to date because of your face, having jerks call you ugly when you are walking down the street, and just feeling like a freak then you would understand my perspective. I also had a cousin who committed suicide 15 years ago because he became disfigured from extreme eczema covering his face and most of his body. It got so bad that he could not go outside without stares, snide remarks, and children crying at the sight of him. So yes it shouldn't be a surprise that someone experiencing extreme acne covering their face and upper body would attempt suicide.

Btw the person who is thinking about Accutane is Jacob. I was just telling him he should just take the risk because he said his acne was severe, it was negatively affecting his life, and he tried everything else.

In conclusion I am only saying that Accutane should be available for those with very severe, painful, and hard to treat acne that is affecting your life and will leave craters in your face.. If you want to help you should protest Accutane being given for mild or moderate acne over 70 percent of the time. However, the drug should be on market for those who truly need it.

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Alright anthony thanks and I plan to continue coming back to here and ill look into probably trying probiotics as well.

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My sister took Accutane several times i believe since her 20's. she suffered terrible with neck & back pain. I never knew until my son became ill that she had taken this drug.. Also in her late 30's she lost just about all her teeth, which were lovely pearly white teeth.. When i asked her wat her dentist had said .. He told her it was bone loss.. She was not aware that Accutane caused this .. But it is a well known side effect along with calcification of tendons etc,. I know of someone whom has this problem in her feet & shoulders... Taking this poision is like steppin in a mine field. You never know what is going to explode next. ! My heart goes out to all the people that are suffering from the effects of Roaccutane & its Generic relatives ;-( Shame on those money making Leeches

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Doctors are ignorant. They give accutane (isotretinoin) out like candy. I guarantee that over 50% of people did not have severe acne to begin with. Especially kids still going through puberty when hormones are raging. I think in years to come you will find that doctors switch to functional medicine and preventative medicine and we start finding out the causes to these problems and not just treating symptoms once they have already surfaced. I was prescribed claravis for very mild accutane and it was my very first visit to the dermatologist. No antibiotics, not even a prescription topical, just straight to claravis. My once thick head of hair thinned, my skin turned pale, my eyes look hollow, skin thinned. Now I have what seems to be rosacea as a 21 year old Italian male. Not a fair skinned 30 year old woman.. My hair never returned. Doctors have searched for everything wrong with me and my symptoms are almost identical to Scotts son. Tendonitis in my shoulders, blood in stool, hair thinning, dry thin fragile skin, joints creaking, dry lips, dry eyes that kill at times. I was a normal kid. Ironically rosacea and many other symptoms can be linked to an unhealthy gut. All signs point to accutane. This poison messes with you on a genetic level and no doctors know how to treat side effects because it's abnormal what it does to the body. Maybe severe adrenal fatigue or insufficiency. That'd explain rectal bleeding if caused by hemorrhoids and dry skin.. Idk I can't believe I took this. My life was so different before. To think that in 5 months I ruined my entire life. At 21 I feel old. My hair is dry and thin, my face is pale and red, I have premature wrinkles around my mouth and eyes. I can't workout or I'll get shoulder Tendonitis. Everyone who ever took this drug should receive compensation.. It's absolutely ridiculous that a drug can cause such lasting effects

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DYMY
Dymy I apologize. I should have been chosen my words better and not been as ignorant. The reason I said what I said was that I personally felt depressed and worthless because of my acne conglobata. Also when I go on other acne forums I would see posts from other sufferers talking about how miserable they were with their severe acne because they were being bullied, ridiculed, had no social life, and other things. I even read three posts from members contemplating suicide. Like Lana mentioned there are studies to prove that people with severe acne and other skin conditions are more likely to feel suicidal than people without acne. Your stepson's case was clearly different than what I assumed it was. Once again I apologize for coming off as insensitive.

As far as you challenge is concerned I cannot imagine losing a loved one or having them experience the symptoms that have been mentioned. So I can understand your point and why you want this drug off the market. On the other hand I cannot imagine this drug being taken off market and my loved one with truly bad acne having no other option. I could not imagine them going not being able to look at the mirror at themselves, feeling worthless, not wanting to leave the house, being stared at in public, and being the object of ridicule. That's what I went through and a lot of people with severe acne go through. All I am saying is that a person should be able to have every option available to them if their acne is very severe. It should be the patient's decision whether or not the benefits of Accutane outweigh the risks. For me the benefits far outweigh the risks because not only was my acne unusually severe I would have been left with terrible scarring as soon as it went away. I would have lived the rest of my life being horribly disfigured.

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Anthony,
I would be glad to pass early signs of gastrointestinal issues. I have mentioned them before but you would have to do allot of reading to find it. On his 5 month of Accutane he became very ill at a high school sporting event. He almost passed out competing while in a track event. We rushed him to the ER only to find out he had been bleeding form the bowels for a week and never told us. He had lost a significant amount of blood once we reached the ER. We followed up with his dermatologist which she wrote a report to the manufacturer of Amnesteem. I still have the letter from manufacturer of Amnesteem admitting his blood loss was due to the medication drying out his colon. We followed up with Children's Hospital in Pittsburgh Pa. His bleeding ceased about two weeks after stopping Amnesteem. He still continued having random blood in his stool which lead to a emergency colonoscopy being done. Due to having an eye infection at the same time and was diagnosed as Uveitis (an auto immune disease ) Dr said to prepare ourselves for either Chrons Disease or Colitis. His results where negative for either. Doctors were than and now unable to find a reason for occasional blood in his stool. My son went from H.S. Tract right into football while taking Amnesteen for 6 months. He never seen a doctor at dermatologist office, only her Physicians Assistant. We later found out that anyone taking Amnesteem ( Accutane etc. ) should NOT be active in sports due to not knowing the difference between back pain from sports or the medication. 20 mg in morning and 40 mg of Amnesteem at supper was what this doctors office prescribed all patients my sons size at the time. I have also questioned if he would have taken a smaller doze for a shorter period of time, he may not have had all the long term side effects.
Your question was " what has he done to help him with his symptoms? He has had, Full Body Bone Scans, XRays, Cat Scans, MRI's to name a few. He drinks about 6-9 bottled waters a day because he is always dehydrated, even a water before a cup of coffee in the morning. He has tried the Candida Diet which was helpful. He has to be very careful what he eats and knows what foods to stay away from. He is a tough young man that keeps to himself allot. Although he has not been diagnosed due to not seeing a doctor for awhile, He has all the symptoms of Celiac Disease like so many others on here. I hope that helps
Scott

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ORGANIC VEGAN RAW FOOD DIET CURES ACNE as well as Accutane side affects!! i took accutane when i was 15 for 6 months, long before i knew of the health benefits of raw food. during accutane i suffered all the 'normal' side affects ie. cracked lips etc. im now 26 and for the past ten years i have had so many health issues which i believe are related to taking this horrible drug. I have severe joint problems, horrible back, neck and knee pains that even prevent me from sleeping. i was also diagnose with IBS, reflux, and Gord disease. One year ago i started on a 100% vegan raw food diet. i also immediately ceased all current medication. one year on and i no longer experience any of these horrible side effects. i have also found out since that this same diet itself cures acne in the first place!! if only i knew that when i was fifteen!! please if you are a parent considering putting your child on this drug, for their sake, try this diet FIRST!! you will save them from a life long nightmare of pain, hospital visits, and dangerous post medications!!

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For anyone interested in a raw vegetable diet. Please check out The Gerson Institute.

Scott

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Scott and Anthony,

You are asking why this medicine is still on the market because you do not understand how bad acne can get. We are not talking about run of the mill acne or even ordinary severe acne. We are talking extremely disfiguring acne that is painful physically and emotionally. Before Accutane this type of acne was truly hopeless and it's victims suffered greatly. I experienced this type of acne before Accutane and it was untreatable until I given Accutane in 1983.

If you are severely disfigured by acne your quality of life is affected very negatively. People with acne face social stigma, emotional pain, and physical pain. The social stigma that people faced was terrible. Some of the first takers of Accutane had acne so disabling that they couldn't even find jobs because of their appearance. Many people could not stand to look at themselves in the mirror. When you go out into public with severe acne you often endure stares, looks of disgusts, and cruel comments from strangers. You lose all your confidence and cannot even look at the opposite gender. A person with severe acne is twice as likely to have suicidal thoughts as the general population. It's truly devastating and the victim needs the most effective treatment possible. I know there are risks but if you are so disfigured that it is affecting your quality of life then you should be able to take those risks. Like someone posted earlier you can say the same thing about face transplants. These surgeries have a high mortality rate and the medication raises your risks for many diseases but the people are willing to take the risk so they can have a normal life and not be a sideshow attraction every time they step out of their house.

As far as I am concerned I did get IBS and some joint pain ten years after my last dose of Accutane so I can't be sure that Accutane was the cause but even if was the cause I still do not regret taking Accutane. The problems I have now pale in comparison to what I went through when I suffered from acne conglobata. When I suffered from my severe acne I would be in extreme physical and emotional pain. I had cysts all over my face and upper body. The cysts would hurt anytime I would try to move my face and when I tried to lie down the cysts on my back would be excruciating. I would sometimes wake up with blood and pus on my linens. To make it even worst sometimes my cysts grew to the size of quarters and they had to be drained by a doctor. Even when cysts drained by themselves it could be a problem because sometimes a cyst would start draining at anytime including while out in public. As bad as the physical pain was the emotional pain was a lot worse. I could not bare to look at myself in the mirror and felt disgusted at myself. Whenever I went out into public it was like I was a side show attraction. People would stare, give me looks of disgusts, and sometimes say horrible comments about what my face looked like. Sometimes my face was in such bad shape that children would cry when they would see me. As a result I transformed from a very outgoing person to almost a recluse that barely left my house. After living that hellish life for five years Accutane was truly a godsend for me. To me IBS and some joint pain are small prices to pay to be able to look be able to look in the mirror, to be able to out into public without being seen as a freak, not experiencing pain in my face and upper body, and not waking up some morning with pus on my bed linens.

I am sorry for your side effects but the patient should be able to make a choice whether of not Accutane is worth it. A person who suffers from the worst kind of acne should not have that choice taken away from them.

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Daniel,
My sons acne was severe when he was 14. but only on his face. Playing High School football wearing helmet made it worse, he did only have school pictures for 2 years in school due to acne.

You asked, How much has it affected his life? He once said to me while watching old movies prior to taking Amnesteem where he was happy. He replied to me, Dad, I'm glad you took movies and pictures of me when I was happy so I can remember them times. That pretty much sums it up.

Scott

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I want to know if anyone has found any relief of symptoms or even a doctor who cares to find what is really going on here. Not one of my 5 doctors will say anything more than "well accutane is a harsh drug" when I mention it with my onset of symptoms.

A year and a half ago i aged 50 years in the month and a half i took accutane. My joints and muscles constantly ache and pop. My digestive system is hopeless and I can no longer eat dairy or gluten of any kind without worsening my symptoms and doubling over in pain for 24 hrs. My night vision is now terrible and blurred. I can't drink or stay out late to socialize without getting terribly nauseous. My "vacation" a few months back was ruined by being sick for 3 days after flying and losing sleep.

I am 30... and i am beyond frustrated at this point. Something is seriously wrong and now all my doctors want to do is suggest prozac? I went from 195 healthy and in the gym, to 145 slow and careful.

Be warned, you cannot sue todays generic brands either they are protected by law because the original is the only one that can be responsible... ironic that it was pulled from the market. Again, if anyone has found any relief from any medications or a good doctor (anywhere in the country) who is following up on the accutane side effects specifically please let me know.

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Toni, you're ridiculous. I, along with the majority of others here, are seeking improvement in our symptoms and support, not money. You can't put a price on your health (at least I can't). That's as much time as I have for you.

Anyway, Clancy - I hear you 100%. I am only 24 and dealing with pretty much all of the same things you are. My vision keeps deteriorating and the eye specialist I am seeing seems pretty stumped. He, along with other docs, have dismissed my Accutane theories pretty quickly, no matter how many times I bring it up.

If you're interested in chatting I would be happy to. I'm willing to share any knowledge and info I have in terms of treating the symptoms.

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when i was 16, i took acutane. now i am 27 and the last 5 years i have had chronic pain in my joints. i have seen 4 specialists, 6 different doctors, and had over 200 appointments. the doctors dont have an explaination for the pain. i ve had two mris. where nothing has showed up. one of my blood test show positive for reumatoide arthritis. i do think my pain comes from the acutane drug.

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Zac.. if you are being affected with symptoms within a week then i would highly recommend you stop taking the drug you were given. My son like many others took this drug & even though in my sons case started with pain at 6 wks into his treatment. By wk8 i made him stop taking it.. it is now 3 years since stopping taking Isotretinoin but my son has joint pain, migraine & tinnitus constantly. Amongst other problems since taking this drug. Do tell your Mum & show her this site. The drug companies get away with selling this because most people dont get symptoms while they are taking it. There are lots of side effects to this drug as it is a chemotherapy drug. I do hope that if you stop now that your pain stops soon. Please Do Not take the chance of ruining your health at the expense of this terrible drug. Let us know how you get on & good luck..

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I'm 24 took Accutane at 18, then again at 19. was cut off after 3 months due to high triglycerides cholesterol alt ast liver enzymes.

its been almost 6 years off the drug and I now have possible thyroid issue, insomnia I cant sleep for more than two hours, my eyes are dry mucus sandy puffy an dark, my skins flaking and shedding and pink, dermatitis or something all over it, losing weight, was 129 5 foot 10 when I took the drug.

I am now 121 and its 6 years later!!! I eat all the time, blood pressure super high, cold hands feet, back pain lower spine, (vit d, fish oil and diet and water seems to help that )

and I still get acne, not to mention dry nose, mouth, hair. basically sjorgens syndrome symptoms. also got two swollen lymph nodes in neck. I did have severe constipation, fiber helped that thank god..

not worth it at all. I spent 5 years in my room afraid to come out dude to the symptoms. anxiety depression

THIS DRUG RUINED ME AN MY FAMILY... CAUSED ME TO ATTEMPT SUICIDE AT 21

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Your side affects just have not happened yet.Trust me they will.My daughter took Accutane sophomore year of high school.She loved the results.I let her take it for 4 months and thats when I realized what she was actually taking ,a chemotherapy drug!! The doctor NEVER ONCE MENTIONED THIS!!! When I read what the side affects people were getting I took her off immediately.She was not happy with me at all but I did not care.Her health came first.It was not until freshman year in college that her symptoms started.Her stomach and GI tract is so out of wack it is not even funny.She has issues with vomiting,diarrhea,belching,acid reflux,and IBS.She has had every diagnostic done including nuclear exams on her stomach, gall bladder, lower GI, upper GI, Ultra sounds, you name it and they cannot find out what is wrong with her. These are all side affects from ACCUTANE. Three years AFTER she took the medication.She still now gets cystic acne and agrees it is not worth going through the pain she is going through now and that she will the rest of her life.At the age of 22 she cant leave the house without a bottle of Malox in her purse.She takes more over the counter medication to keep comfortable than I have in my lifetime.It is not worth it .If you have taken it trust me your side affects are soon to come.

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Dear all,
Its sad to hear this all about the side effects of accutane. I also took accutane for 3months for my acne treatment and i got serious hair whitening even 1 year after i dropped it..

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hello. Please stop taking this drug. my younger brother took accutane and suffered seizures and eventually got schizophrenia. Please for the love of life do not evertake this drug. it is meant for chemotheraphy. not to cure acne. chemotheraphy destroys your cells forever and eventually kills you. why would you even give this to teens? doctors are definitely in it for the money. because you will keep going back to them because of your problems and they make more money. i hope nothing serious happens to you people. start eating healthy. vitamin A overdose is serious. there are 4 vitamins that the body absorbs and does not leave the body. those are vitamins A, D, E, and K. hope this information gets to all kids out there. Please let everyone know how bad this drug is. misinformation kills.

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Jim, Accutane has been reported to cause severe and seemingly permanent sexual adverse effects. Numbness and ED are the most common. I'm not sure I can posts links here, but if you search for "Accutane+sexual dysfunction", you will find threads full of hundreds of young men and even some young women talking about sudden and permanent sexual side effects and infertility in some cases. Propecia and some SSRIs also seem to cause the exact same problems as we have in susceptible individuals. Unfortunately, no one has really found a reliable treatment yet.

There was a 1994 letter from a dermatologist published in The Lancet which described cases of erectile dysfunction as a result of isotretinoin. There was also a Mexican University study in 2006 showing the same side effect. Case studies of similar retinoid drugs describe depression-independent ED as a side effect. The authors of the studies often note that sexual dysfunction is likely under-reported to health authorities since it is such a difficult topic to discuss.

I took a course of Accutane in 1998 and a very short one in 1999. My libido dropped and I became depressed while on the first course. Things got much better after it was over. …I was almost back to normal. The same symptoms developed soon after beginning my second course, only much more severe and they have lasted to this day. My main problems now are lack of libido, ED and numbness, and flat/blunted emotions. Even when in a relatively good mood, I still have the sexual symptoms. This all began at 17-18 years old while on Accutane. Diagnosed with secondary hypogonadism when I went to have things checked out, but TRT didn’t help. Never had a health problem before in my life.

If one needs any evidence that the claims of severe side effects are not a nocebo effect, there is an online FDA database which contains over 200,000 reports of around 4,000 different adverse reactions from isotretinoin. Nearly half of reported side effects have a high PRR value, showing a strong correlation with Accutane/isotretinoin compared to their reported frequency in association with other prescription drugs. Remember that Accutane is commonly prescribed to young people who have a much much lower probability of randomly having health problems than the older people who the vast majority of prescriptions are written for. For example, twice as many prescriptions are written out for those who 65 or older, than younger. Nada, like you said, everyone’s body is different, so there is no way to tell beforehand who will and who will not develop side effects. Chances are you will be fine, but IMO, it’s not worth risking losing your quality of life forever even if the odds are stacked in your favor. The drug is still the same molecule as it has always been. No improvements.

Scott, I sincerely hope your son's problems are getting a little less severe with time, and he is able to find some peaceful moments.

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"Tummy infections" "common problems" "finding something better to do with my time?" I wasn't aware colon cancer was considered a "tummy infections." Hell, maybe if we had treated the colon cancer with an antibiotic, my 28 year old husband would still be alive! What college did you get your PhD at? I need to spread the word... "Hey guys, we've been wrong all along, cancer can be cured via antibiotic! It's only a tummy infection!!!!"
You're by far one of the most ignorant people I've ever had the joy to interact with! Know your facts! After investigation started on the manufactures of accutain, they found back in 1994 that they knew the horrible side effects the med caused and they decided not to disclose that info to the consumers. A man in New Jersey was awarded $27 MILLION because Accutain caused his Crohn's. It's all public record, look it up!

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