Discussions By Condition: Medical Errors

Accutane (Isotretinoin)

Posted In: Medical Errors 20 Replies
  • Posted By: nvapro
  • September 2, 2008
  • 09:50 PM

Just wanted to tell as many people as I can, my opinion, of anyone considering taking this form of medication to rid themselves of acne. I believe it is not worth the risk involved. I have many success stories and fails alike. I took it for about a month until I started having lower back pain and to be honest just threw it in the trash (expensive too!!!) and realized you know what, acne is natural and is not a disease. It is also a good thing your skin is producing sebum because that means your skin cells in your face are still alive and working (over-working not a bad thing). When you get older those skin cells start to die and thus you don't see to many grownups with acne.

Anyways point is I am having a lot of things going on with my body now (mainly nerves) my vision has decreased, my floaters have become more prevalent, I had (and still have) Tinnitus for months! Ringing in my ears everyday when I am fatigued and it is time for bed. Months we are talking about. Luckily it is starting to go away as I have had to lay off any sort of drugs.

Thats another thing you do not want to continue marijuana or adderall usage if you are a student and taking this drug. It will send your nerves into a crazy state. I can no longer smoke a joint because I did so regularly while on this medication. And trust me I was a healthy 20 year old male actively in sports.

This medication has not been tested by the rigors of science and yet they prescribe it to thousands. I mean look at the waivers you are signing!!!

May hear or see things that aren't real, suicide thoughts, liver abdominal bleeding, lower back pain, serious brain problems, stroke, seizure.

*****t, please just live with the acne you do not want these problems. Every human being is different and while some may tell you hey its a miracle it cured me, look, I am 20 and (used to be) above average health. I don't know if its genes or what but this Isotretinoin (Accutane) messed me up bad. Your are playing chance...The dermatologist does not know you personally or your habits. Isotretinoin is also a form of Chemotherapy!!!! Why would you take it to get rid of acne!? It is a quick fix, and as you all know nothing is free in this world. Everything is give or take. You will lose acne but you will have something else in return, possibly worse. Companies are making money and thats all that matters. We are numbers and statistics to doctors and big business. I would like to think we are individual human beings and this is why I am taking the time to write this. As of now my problems come and go, I may wake up one day and everything I touch that is cold, burns. Muscle twitches throughout my body. Ringing in my ears every ***n day...And my vision.

Although I am not much of a doper or doctor type person I eat and train hard for my sport so I am planning to see a neurologists for CT scans and such. But I refuse to take any medication again. I will eat healthy food and drink water and that is all a human needs. You may disagree with me but look the human race has lived thus far. And diseases and neurological issues are sky rocketing in this day and age. I wonder why...

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20 Replies:

  • Just stumbled upon your post, I too have just finished my accutane dosage in September and am experiencing the same things you have just listed. Respond back when you get this, i have a few questions since our symptoms are very similar.
    Anonymous 42789 Replies
    • October 16, 2008
    • 08:52 PM
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  • No problem man, just message me here or email me. I took Isotretinoin for about a month, Jan - Feb, and started having noticeable lower back pain, wild vivid dreams, decreased vision both day and night, and said to ***l with this crap and threw it away. Bad news is, it is October and I have all those symptoms to this day. Best advice I can give is to eat healthy, drink plenty water, and sleep everyday at least 8 hrs. You cannot smoke marijuana (I used to) or any nerve affecting drugs. Alcohol is ok and cigarettes are ok as long as you have moderation. To this day my veins are more prevalent and my vision is ****. If I am fatigued the slightest bit my muscles twitch and hands clamp up. Circulation is poor and sometimes when I'm working on my car I have to hold my back to stand up LIKE AN OLD MAN. I am 21! And it is October (nearly 8 months ago)I can't do anything, because I signed a bunch of waivers although I might just wait for that dermatologist in the parking lot one day and punch him in the mouth...better yet track down the accutane company CEO and punch him in the throat. :eek: Which brings me to yet another symptom! When you are on this medication your body does not heal. I was in a fight while on this medication and the scars on my knuckles/fingers took so long to heal and scarring is more prevalent than normal. Your body does not produce sebum or oil and thus your healing is affected outside whilst I can only imagine on the inside.Adamsilenceviolence@gmail.com
    nvapro 17 Replies
    • October 17, 2008
    • 02:24 AM
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  • I'm 32 years old. I've had Acne since I was 13. Although the acne is not cystic anymore, I still suffer.....and I've been on Accutane TWICE.I only suffered a heart attack and a few minor set backs, just to have to live with it for the rest of my life anyway. I had my heart attack at 23 years old. My lipid levels and cholesterol have never returned to normal and I still suffer from extreme dry patches all over my body. I used to be an avid runner and now I have to settle for monitored treadmill or walking.....we don't want to have another heart attack or a stroke. God forbid. I won't even go into the depression problems or the fact that I am sterile and can't have children either. Its an extreme overdose of Vitamin A.....of course it will screw you up in more ways than one....with long term issues.Accutane is not a good deal! Stay away from it! I know I was desperate, I had SEVERE cystic acne for several years (and its extremely painful!). But with all the laser treatments and what not that are out there now, try that route first. It can't be more expensive than Accutane and your health will thank you for it. I am getting laser treatments now to fix the scarring and try to finally get rid of my acne. I am actually very pleased that it is not as expensive as I thought it would be!On the bright side, I do look like a teenager! :)Stay away from Acutane if you can. There are benefits to it, but its just not worth the long term risks and side effects and if anyone offers you a SECOND treatment.....RUN AWAY!!!! I had minor side effects the first round, but it was the second round that did me in, I think. And although they say the side effects are not long term, obviously they are.And teenagers: Don't worry. Its not typical to have acne as long as I have had it, its very rare. Its probably something to do with how cystic it was when I was younger. (laser treatments, skin peels and stuff like that wasn't readily available to me when I was a teenager either).
    Anonymous 42789 Replies
    • November 3, 2008
    • 08:23 AM
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  • ^ Thank you for your post. It pains me to hear your story and I feel fortunate being one of the lucky ones who threw the prescription away after 1 month of taking Isotretinoin. I also read the stories of that young man in the UK who did the full 5 month treatment and was diagnosed with schizophrenia and prescribed to countless anti depressants which eventually led to his suicide.I also hear the retorts as to how this drug does not affect the human brain. Let me take this time to share something that I've never shared before. Besides the lower back pain, ringing in my ears, huge loss of vision, the transient ischemic attack (mini stroke) I had in April. The first day of prescription, the second pill before bed time, I had the most intense dream. I heard everyone in the world who was awake talking all at once, voices I have never heard before, people I have never encountered in my life, all of a sudden it got silent and a little girl started whispering "It might be good if you get the princess..." I was conscious during this whole 1 minute dream and after she said that I started asking her by thinking "Who are..." and my thought was interrupted with "the snake...they call me the snake." And then I instantly wake up with full recollection of the dream. Now I had never had such a realistic dream like that in my life. And for a month or two after Isotretinoin I had countless dreams or should I say nightmares because hardly any of them were good thoughts.If this is not proof that Isotretinoin screws with your brain...Then the scientists and doctors need a slap in the mouth. And for what...Profits from acne.Roche Pharmaceuticals....I'm coming for you.
    nvapro 17 Replies
    • November 4, 2008
    • 00:29 AM
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  • I have to agree w/ you NAVAPRO. I took took the drug Accutane in Feb 2005. Immediately when I started taking the med, I experienced the worst headache of my life. It felt as though my head was going to burst. I called my dr. immediately and he insulted me. Told me (in a nut shell) that I was over exaggerating and that If I could not handle the effects of the medication, that I should just get off it. I responded that I was just calling because, the flyer said if you get this type of headache, its states you should call your doctor. I was so disgusted w/ his response that night, I decided to get another dermotologist. When I got the new dr., he decided that I was on too high of a dose too early. He then lowered my dose and put me on dapsone with the accutane. So, I was on the lowest possible dose of accutane over a VERY LONG time. I think it was almost nine months but I am not exactly sure. However during this time, I experienced HORRIFFIC headaches (again I stress, pressure in my head). When I went to the dr, he would check into my eyes, with a second dr. present to see if a brain tumor was present (I guess these were consistent with the use of Accutane near the pituitary gland). He confirmed there was no sign of a tumor so he allowed me to stay on the lowest dose of Accutane. I stuck it out. Other side affects I had were, extreme body aches (felt like bad bout of the influenza virus at times), also had very chapped lips. Nothing else though. Well, the VERY BAD part comes after I get off the accutane. Here I am in 2008 still SUFFERING every single day with terrible headaches. Sometimes I don't even want to live anymore. It has been confirmed by three neurologists that I have Intrcranial Hypertension (psuedo Tumor) Basically I have an excess of spinal fluid that goes up into my brain and causes swelling which makes my head hurt tremendously. Once I had a headache for four weeks straight. I am now on Topamax which has helped me a little but not much. They want to start Spinal taps but I am really scared. I'd rather just die I think than go on. I tell my friends that I wish I could go back to 2005 w/ the knowledge I have now and NEVER take Accutane. the pain I endure now is unbearable. My words to all is, you may be the next one in line who gets the intracranial pressure. Its to die for. Deal w/ the acne, its not forever, this is.
    PAPERTIGER 6 Replies
    • December 10, 2008
    • 11:13 PM
    • 0
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  • ^ Thank you for your post! It hurts me inside when I read everyone's story. I also feel very fortunate for taking it only for 1 month when the dermatologist wanted 5 - 6 months. To this day I still get ringing in my ears (tinnitus) at night when I am tired and when I work out my bones ache!! My muscles are improving but every time I curl weight my elbows and knees and back are met with sharp pain. I am starting to take calcium and flax seed oil to hopefully get my bones back to normal :/
    nvapro 17 Replies
    • December 13, 2008
    • 02:38 AM
    • 0
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  • Navpro,I commend you on trying to educate people on the dangers of accutane. Unfortunately, it is only one of hundreds of drugs prescribed that can cause all kinds of problems:confused:. ALL meds have side effects, some of them severe. Please everyone, if you are prescribed a medication, look the med up on www.drugs.com and decide for yourself if it is worth the risk. My last comment is to try acupuncture to help you with your back pain and help you detox from this medication. Acupuncture works! You may also want to look at your vitamin D levels. Best wishesDOM
    acuann 3080 Replies
    • December 13, 2008
    • 04:05 AM
    • 0
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  • My son took Accutane about 10 years ago for a 2-3 month period. He initially was paralyzed from the waist down, not to mention the large scabs on his face that resembled chemical burns. UCLA stated it was the "worst case of side effects from accutane" they had "ever seen" He has had health problems since. Dr. are unable to give him a diagnosis. His symptoms are, fatigue, generalized pain, head aches, anxiety, insomnia, epstein barr syndrome, "sick" all the time, hypertension. This for a 26 year old who used to be an active baseball/basketball player. Any suggestions on finding a doc to help? thanks very much. a concerned mom
    Anonymous 42789 Replies
    • December 13, 2008
    • 05:27 AM
    • 0
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  • Go away Dominic, nobody likes you, did you take this medication? Did drugs.com take this medication? Just because you read books, watch movies, and study about war doesn't mean you have firsthand account of what war is like. The same can be applied with doctors and the human body.
    nvapro 17 Replies
    • December 13, 2008
    • 05:41 AM
    • 0
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  • My son took Accutane about 10 years ago for a 2-3 month period. He initially was paralyzed from the waist down, not to mention the large scabs on his face that resembled chemical burns. UCLA stated it was the "worst case of side effects from accutane" they had "ever seen" He has had health problems since. Dr. are unable to give him a diagnosis. His symptoms are, fatigue, generalized pain, head aches, anxiety, insomnia, epstein barr syndrome, "sick" all the time, hypertension. This for a 26 year old who used to be an active baseball/basketball player. Any suggestions on finding a doc to help? thanks very much. a concerned momThank you for your post cmashore, I just had my first appointment just yesterday with a neurologist. As soon as I mentioned Isotretinoin he automatically knew and started shaking his head. He put me down for CT scans and blood work next month. And in a week I go in for a sleep study where they hook up some wires to my brain and I sleep over for a night. They are going to be in for a ride. I can't wait to see myself on camera. Ever since Accutane, I have dreams...well...nightmares everyday and I sleep with holy water by my bed because they are so vivid and real. As soon as I fall asleep I will be waken up and then I have to coax myself back to bed and then I'm usually fine. As I wrote, I took it for a month and too have experienced insomnia, fatigue, and hypertension. Besides school all I do is exercise and drink water and eat healthy, take vitamins and flax seed oil. And my body is starting to come back. So, this is what I recommend.
    nvapro 17 Replies
    • December 14, 2008
    • 03:23 AM
    • 0
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  • Hi I am curious to see in your results with the neurologist!!I am currently suffering from severe acne for 7-6 years now from jawline to cheeks/chest/backIve gone through several over the counter products to skin peels to antibioticsFinally went to see a new dermatologist and gave me options of aramis laser or accutaneI opted just for antibiotics but they are just worthless s**t as it hasn't helped over the past few yearsBut I have started to search around for more info on accutane and it scares me so many people having long term effects years and years after taking this drug or more like poisonYou only hear about the great effects it has given people but never the negative side effects people have years after taking itI am in confusion at a lost of hope what to do to treat my acne, but will not take that route of taking accutane and I thank you for sharing your experiences
    Anonymous 42789 Replies
    • January 1, 2009
    • 10:21 PM
    • 0
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  • This thread has been posted to the Acne.org message boards:http://www.acne.org/messageboard/Accutane-ruined-people-s-t221774.htmlThank you all for sharing your experiences with this dangerous drug. Hopefully some people will read your stories and think twice before poisoning themselves.I was offered accutane by my doctor and after reading the information pamphlet declined. After a few years my acne just went away.It's a dangerous "solution" to an often temporary problem.
    Anonymous 42789 Replies
    • January 6, 2009
    • 04:09 AM
    • 0
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  • Okay, well first of all...HOLY ****.Terrible, terrible stories here. I just got my prescription for Accutane yesterday...am still waiting on the results of the 2nd prego test as a necessary precaution, but will get the ok to fill it in a couple of hours...There's absolutely no way I'm taking this medication. It seems to really mess with your nervous system...I was on Chantix a while back to quit smoking and had a few of the same not so terrible side-effects, like the vivid dreams and bodily ticks, but who knows if i'll be that lucky with this crap..My vision already sucks, I already have lower back pain (I'm 25 but have back pain around my cycle, monthly.), and already have vivid dreams without medication, so I'm fairly certain that poison will eventually kill me.So, yeah, thanks for savin' my life, guys!and good luck with everything...
    Anonymous 42789 Replies
    • November 6, 2009
    • 02:45 PM
    • 0
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  • HelloI'm sorry to break up this thread. But i'm a norwegian male at 24 and starting on Accutane, or isotretinoin which we call it here, in january next year. I was looking after good\bad things about isotretinoin and stumbled over what you guys wrote. Its really sad that so many people have been hurt severely by this drug, but don't forget about all of those who benefit from this. I know its probably a temporary situation with the acne, but temporary may mean till i'm fifty years old. And thats not an option for me, because this looks really bad and hurts to. I'm kinda desperate...I hope for my sake that the side effects i experience isn't to severe on my body and mind. Fortunately we have good health care in norway, so if something ****ty happens, the government will pay the bill at least. Time will show if its worth it. But thanks for sharing your stories with me! Really opens my mind for questions to ask my dermatologist. If you guys want i can share my story when i'm starting the treatment? Best wishes and sorry for my rusty english. :PA.A
    Anonymous 42789 Replies
    • December 12, 2009
    • 04:31 AM
    • 0
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  • Isotretinoin worked great for me!, I took it twice, I did have impaired vision, lower back pain, and all those side effects! but they're there just for few months, I'm a med student and I one thing i know for sure, that guy who posted the first threat, the one that said "Acne is normal, overproduction of sebum is great" knows nothing about Acne and healthy skin!.
    Anonymous 42789 Replies
    • February 25, 2010
    • 09:43 AM
    • 0
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  • ive been off isotretinoin for about a year now, and when i started taking it, i noticed severe changes in my mood and how i felt all the time. my joints started cracking every time i moved my elbows or knees, i felt sad and hopeless all the time, felt like i had no energy, and just simply hate everything, started getting nightmares, violent thoughts, even got so sad ive honestly thought about killing myself a few times, ive never went to get any help cuz i feel like im just gonna be like this the rest of my life. i still feel sad and angry all the time even now, and ive messed up so many relationships with people because of the way ive acted, but i feel like i couldnt help how i did. i started getting ringing in my ears and my vision during the night started getting bad, its just a terrible drug... i can say that it was one of the worst decisions of my life to start taking that ****ing medicine... and my acne came back too so it pretty much sucks **s
    Anonymous 42789 Replies Flag this Response
  • a few questions for nvapro.I too am suffering from some effects of accutane, but I just want to find out what your lifestyle was like whilst taking it. Did you drink? smoke cigarettes? obviously you were smoking weed, but what sort of other drugs did you take? and how frequently?I used to take a lot of ****, too much to go into! pre-accutane, i stopped everything before taking it as I was aware of the risks but wanted to give it a shot anyway, although havin a **g was something I just couldnt go without (about 10 a day). Just stopped taking accutane 3 days ago after finishing 5mths because of muscle pains. After I walk around for a bit my muscles don't feel so tense, but they're strained from the back of my thighs upto my buttcheeks! and really badly aching in my right bicep, also suffering from the vision problems.All I can say is, I've gone from being an extremely pro-active heavy drug user (not advised)/drinker/going out everyday, waking up at 10am playing basketball every other day and football in the late afternoons (adversadly skipped uni everyday ;))TOOversleeping, dragging myself out of bed having to roll because I can no longer support my upper body to sit up straight, can't do 1 situp..groan like an old man when I lift my right arm to spray deodrant, walk at about 1mph whilst hunched, take painkillers everyday which don't really seem to work. Feel about 80, great. But I have clearer skin (not fully clear)My advise to anyone wanting to take this drug is, don't do it. Its not worth it. Even into the start of my accutane treatment I was extremely active, after 5months of taking it I feel like I've aged 50years and from what I've read allover the net, these side effects are extremely long lasting. It's really not worth it. But if you are going to take it, make sure you stay extremely well hydrated, don't smoke, don't drink, don't over exert yourself, just drink plenty of water and lightly jog/walk if you like to exercise.
    Anonymous 42789 Replies Flag this Response
  • Which neurologist did you see in LA? I'm looking for a good doc that knows about Accutane side effects!Thank you for your post cmashore, I just had my first appointment just yesterday with a neurologist. As soon as I mentioned Isotretinoin he automatically knew and started shaking his head. He put me down for CT scans and blood work next month. And in a week I go in for a sleep study where they hook up some wires to my brain and I sleep over for a night. They are going to be in for a ride. I can't wait to see myself on camera. Ever since Accutane, I have dreams...well...nightmares everyday and I sleep with holy water by my bed because they are so vivid and real. As soon as I fall asleep I will be waken up and then I have to coax myself back to bed and then I'm usually fine. As I wrote, I took it for a month and too have experienced insomnia, fatigue, and hypertension. Besides school all I do is exercise and drink water and eat healthy, take vitamins and flax seed oil. And my body is starting to come back. So, this is what I recommend.Which neurologist did you see in LA? I'm looking for a good doc that knows about Accutane side effects!
    Anonymous 42789 Replies Flag this Response
  • i am a 23 year old male and i have been taking isotretenoin for over 3 months, my side effects have included,dry skinstrange dreams (doesnt bother me)chapped lipsthats it, i run and box every day, im in the army and i drink occasionally. ive have started to watch my weight. i wish i could say i drink in moderation but i dont. my last blood test came back fine. i have also experienced sickness and i burn in the sun a bit easier, i know i have 3 months left on this drug but so far i have had no headaches, no ringing in the ears, no joint or muscle pain and no bouts of depression..... and to say that this drug has not been tested is stupid because it has and the 2 dermatologists i have seen, they both expressed their concerns with depression and joint pain etc but from the 1000s of patients they have been with only 2 have committed suicide, and whos to say that was the drug.im sorry to hear these stories but non have confirmed that the drug was the cause.... these could be nothing more than underline problems exasperated by accutane.
    Anonymous 42789 Replies Flag this Response
  • i am a 23 year old male and i have been taking isotretenoin for over 3 months, my side effects have included,dry skinstrange dreams (doesnt bother me)chapped lipsthats it, i run and box every day, im in the army and i drink occasionally. ive have started to watch my weight. i wish i could say i drink in moderation but i dont. my last blood test came back fine. i have also experienced sickness and i burn in the sun a bit easier, i know i have 3 months left on this drug but so far i have had no headaches, no ringing in the ears, no joint or muscle pain and no bouts of depression..... and to say that this drug has not been tested is stupid because it has and the 2 dermatologists i have seen, they both expressed their concerns with depression and joint pain etc but from the 1000s of patients they have been with only 2 have committed suicide, and whos to say that was the drug.im sorry to hear these stories but non have confirmed that the drug was the cause.... these could be nothing more than underline problems exasperated by accutane.yea my side effects while on the drug were the same. it wasnt until 3 months after stopping of the drug did the side effects kick in. the strange dreams too huh? your prob gonna get a load of side effects as i did. just from experience tho. you can listen to your doctor who hasnt taken the drug and follows a bell curve graph and you can hope your not one of the unlucky ones, although, as with any bell curve you are gambling with your life. dont believe me, take accutane, pay your dermatologist money, dont make a difference to me either way.
    Anonymous 42789 Replies Flag this Response
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