Accutane Long Term Side Effects (Page 22)
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I have a son that took accutane 60 mg a day for six months in a row three years ago. Now after many trips to doctors over strange medical problems, it seems accuatne is the culprit medication that has caused servere joint and muscle pain, severe dry lips, redness in face, eye infections of own immune system attacking itself, systems of osteoarthritis in both shoulders, both wrist and right hand, blood in stool, possible hair loss, abnormal liver function test results in AST and ALT. My son went from being a high school football and track athlete while taking this medication three years ago to someone that is in constant pain just washing a car. After I have researched this drug extensively, I can't believe that the FDA allows this drug originally made for cancer patients to be marketed for teenagers with acne. All one has to do is look online what vitamin A overdose does to someone and then you have the results of what this medication has done to my son. This drug needs to be taken off them market ASAP and the drug companies that make it need to compensate all teenagers that they have possible ruined their future. Shame on them! What is going on here?

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Hi mitch uk- (and everyone!)
Im in scotland too lol .. Its difficult to discuss here having to keep checking and email addresses being deleted- if anyone interested i set up a private facebool group
Called roaccutane action uk so we can all have somewhere to chat more freely!.. I am not actually sure if it was generic i took- ive applied to get my medical records out from hosp and see what i can find out...my issues are severe gastric- but not diagnosed as crohns etc yet but doc can find no cause after nearly seven yrs of investigations its left me so ill i can hardly function also mental symptoms ..they dont seem to go away! Im using homeopathy just now bu have spent so much money trying to get well its ridiculous! I was on it for 9 months i can clearly remember my consultant saying that my skin was looking great but 'och we'll do another few months just to be sure!' Crazy!! Looking back my acne wasnt bad at all just a few red pimples which were def hormonal..i didnt have cycstic acne for sure! Maybe i we can clear our livers it will help us feel more well..but im not convinced..i have emailed the mp ed vaizey who is interested in this and he said they have a growing list of people getting in touch re accutane.. So thats something to do also contact your local one.. And maybe we can all get together (uk) to try an find a solicitor who will help us!
Ang

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Scott,
Do you live near Pittsburgh by any chance?
Thought you might be nearby if you took your son to Children's.

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To Mitchuk and Scott,

I don't know about your sons but my acne was so severe that I would have possibly taken my own life if I did not find a cure. You may think that I am exaggerating but I am not. When I was 23 years old in 1994 I became afflicted with severe cystic acne and for three years it had devastated my life. My face was disfigured by the breakouts and affected every aspect of my life. It had destroyed my self esteem, I was very ashamed of my appearance, I stopped dating, and I even stopped going out unless it was necessary because people would stare, give me nasty looks, and even say terrible things about the way I looked. In 1997 after three years of trying everything else I was prescribed Accutane. While on the drug my cholesterol shot up, I experienced joint pain, eye dryness, and lip dryness. After I took my last dose the side effects went away but in 2002 I was diagnosed with moderate arthritis and ulcerative colitis. Despite these side effects I DO NOT regret my decision to take Accutane and I even consider it a life saver for me. Why you may ask? The reason is that I am still living a much better than when I had severe cystic acne. I am able to feel good when I look in the mirror, I am able to go out on dates, and go anywhere I please without being the subject of stares and hurtful remarks, and I have been happily married for five years. If it wasn't for Accutane I would have either taken my life or would have wound up as a recluse. I am sorry about your sons but Accutane needs to be on market because right now it's the only effective option for severe acne and other disfiguring skin diseases. Unless you have lived with one you cannot imagine how much of an impact a disfiguring disease can have on your life. There is a reason why people with diseases like severe acne, vitiligo, psoriasis, eczema, itcthyosis, and etc are much more likely to feel depressed and commit suicide.

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Thought I might as well as introduce myself on another forum.

Hi I'm Mike, I took Roaccutane for 10 days in October/November 2012. Since then I have had severe gastric issues and emotional blunting although both of these have recovered somewhat in the last 14 months. However, the sexual dysfunction seems to persist with no intent of letting up. I'm currently trying the endocannabinoid method of recovering (cannabis for the uninitiated).

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Mitch,
I live in the USA. My son took the generic form of Accutane called Amnesteem. As far as I know, lawyers only want to talk to you if you have Crohns or Colitis.. Also it seems generic versions of Accutane are not eligible to sue do to being a generic. The Food and Drug Administration( FDA ) regulates drugs and keeps track of complaints of side effects etc, from drugs. Problem is the FDA and BIG PHARMA are all in bed together. No hope here for any compensation for people with long term side effects. BIG PHARMA sends lobbyist to Washington D.C. and they get their way with laws with dangerous drugs putting wealth ahead of health on a consent basis.

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This was a young girl that suffered from accutane which was on the news in the UK

itv.com/news/central/2013-01-03/teen-blames-acne-drug-for-severe-depression

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Anginver.. They deleted yr email. Unfortunately it wasnt roacc that my son was given it was a generic. My sister has had Roac though & lost most of her teeth. Will try contact u unless u can work out my mail add. {edited for privacy}. Which u need a satelite dish to use & is based in Scotland lol

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Mitch I'm in the uk I've emailed mp- Ed Vaizey who is currently compiling a list of people affected by roaccutane, I think it's snowballing as so many folk getting in touch with him- they added me to the list and urged me to contact my local mp too with concerns, from what vie seen a lot of people are filing legal suits against roche too but it's just finding someone in the uk who will take on such a big task- I've spen thousands on alternative medicine to try and get well and I don't even feel well enough to work to fund this now..a d I'm no better.. The way I see it they should be paying for us to get well again or at least have a quality of life!! Pls feel free to email me -{edited for privacy} :)

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Bill.. Its not that the effects are poorly understood if you look at side effects if given as a chemo drug. They dont want to aknowledge the effects when they give then for Acne or other skin related problems.. The trouble is by killing cells it causes all kinds of knock on effects to the sensative nerves, neutrons etc on the complex body !

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Mitchuk,

Sorry I can't be of much help. If you live in the U.K. I would recommend writing or emailing your MP about what happened to your son.

I can only look forward to those of us suffering finding a way out some day.
It's very difficult to do that when the drug's effects on us are so poorly understood.

If the governments push for research there's a chance we might find a means of treatment. This seems to be the only way to stop the vehement denial of our existence too. We don't currently have much evidence of causation.
Just hundreds of reasons to be suspicious of this trash drug.

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Being a Chemotherapy drug this kills cells. If you dont have Cancer you are only killing good cells as you more likly do not have bad ones ! That is the gamble you take when you have cancer. You dont have much of an option. These greedy pharma companies jumping on the " fill my bank account with money" band wagon . Simply dont give a toss about what they are doing to all these mostly young people. Isotretinoin is causing more harm than good in the long run but because most dont feel the pain or suffer with the problems until weeks, months or years after stopping this drug they get away with it ! So most people do not associate or ever imagine that their problems stem from taking this drug earlier in life. We are supposed to prove that this is the cause. They dont have to prove its not. Dermatologists just lie & not many doctors will admit the association of this drug with the many side effects and Damage it is causing. Its only afterwards when you talk to people & discover the many that have taken this drug that i realised how many people unknowingly are suffering after being given this Toxic Poision !

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Bill. 2 yrs ago my son ended up in A&E as the pain was so bad they thought he had intercraniel pressure. When they did Lumbar Puncture they said his reading was normal. He was in bed 3 wks before he could even sit up. Because of joint pains he never went out but played xbox to keep his mind busy could also have played a part in the Migraines he thinks. As some people that play or rather look at screens for long periods can end up with migraine, which could have added to his problems. He will be 20 next month and goes nowhere only on a rare oaccasion. I have a younger child & we cannot do anything as a family apart from watching her on the swings in the park. As he suffers joint pain which is made worse with excercise. He has had a brain scan but they were looking for tumours which he didnt have. Although he didnt let them complete the scan on his neck due to the noise. He went from a 16 yr old that trained & had definition to losing approx 21pounds sitting home in pain. Chest pains. Eye lashes falling out. Sore throat. Insomnia, he became very angry & also has stomach issues to which he stopped eating pork, wheat & gluten along with other foods high in Vit A. ( carrots,corn etc) my son ended up drinking shakes that they give to cancer patiens & people that cannot eat as he could not keep food down for some months. my daughter has a peanut allergy so shopping is a real task. I mostly try cook dinners wen possible but it makes life difficult sometimes. I just do not know where this will end . We argue at times because i am frustrated with the situation and his lack of communication with other people. He also suffers with dry sore eyes and wears a blindfold most of the time.

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Mitch,
Has your son been tested for pseudotumor cerebri a.k.a. intracranial hypertension?

Headaches and tinnitus are signs of intracranial hypertension.
This is a reported side effect of retinoid drugs like isotretinoin.

They might be able to do something to relieve the pain if they find this is the cause.

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Worried parent . Everyone i know that has used this drug suffers from migraine even years after stopping the drug. My son only used the drug for a totall of 8 wks. Wk 6 started with joint pains. Endless other side effects & many different docs with no diagnosis. Now 3 yrs after taking this drug he has a migraine 24/7 and ringing in his ears as well as joint pain . He was on 30-40 mg i think !

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When I was 21-22, I was taking mostly 40mg with a week or two at 60mg. The 40mg was a lower dose, but it worked for me with minimal side effects (and, knock on wood, I'm doing great 4 years later!).
I would be cautious, however, to take this at such a young, developing age like 13. If I could go back, I may even shy away from it until after I had children (I'm at a point where I'll be starting to have kids within the next few years, and, although there are no proven links to any long-term reproductive-related symptoms, it worries me a bit.)
Does your daughter have the ability to wait until post-high school, try other options in the meantime, and then resort to Accutane as a last-case option if/when she'd be able to sign a consent form on her own (aka when she's past the prime of puberty)?

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Can you tell me the Mg you or your child took while on Accutane. My 13-year-old daughter is taking 20 Mg. She has been on it for two weeks and is already seeing results. The only side effect so far is an occasional headache. The long term side effects you all have mentioned worry me, but I have friends that have had great results, with no long term side effects from the med.

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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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Please be aware of high risk side effects of this drug. I would never take it. A close friend of mine took it when she was a teenager for acne and it did help at the time. However she now has no quality of life. She has had unexplained episodes of extreme arthritis as well as other immune mediated issues. No GP could work out the cause. She now cannot even leave her house as she is in constant pain. She describes it as boiling water on her face, neck and arms which never stops. Her skin is constantly burning and itching and sometimes she cannot even talk or eat as her face is so painful. Drs now think Roaccutane may be the cause as it has made her skin ultra sensitive to everything. She cannot tolerate sunlight or wind on her face and her eyes are always sore too. She now has hair loss and has lost lots of weight as she struggles to eat. She is now unable to work and has no quality of life. She is only in her 30's. Drs have tried all sorts of medications and laser therapy. Nothing has helped. She has tried exclusion diets and had numerous skin and blood diagnostics performed. Can anyone help? I need her to see a specialist who may be able to relieve her symptoms. Please help me help my friend.

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Danielle M, I am so sorry for your loss. I will keep you and your sons in my prayers that you will continue to gain strength each day that passes.
I've read enough on here to know that I will NOT be taking Accutane. For some reason my body decided to get acne (not severe) in my 30's and I was told about Accutane from a dermatologist. I will now research and seek other options to fighting this. Thank you all for the information you have provided and I hope that others will get ahold of this information before they take this drug. To those of you have taken the drug and who are now suffering from long term effects I pray that things will get better for you. Take care!

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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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