Accutane Long Term Side Effects (Page 85)
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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 After I have researched this drug extensively, I can't believe that the FDA allows this drug originally made for cancer patients to be marketed for teenagers with acne.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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Sorry, I typed Anthony instead of Scott in my last reply.

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Anthony, It was so long ago I took Accutane. I believe I was 14. I don't know what doc records are available but I have been seeing the same gastroenterlogist for the past 17 years. And have been going the past five years with new complaints and testing. I have also shared my gastro problems with my primary care physician and she founds something in my bloodwork where I have to go back to the gastroenterologist. I am looking into a class action suit to see if my situation has any merit. But honestly, if there is anyone who has extensive long term effects that may be due from this drug, I am the example. I don't believe it's worth the risk to take such a thing if you know now what it can do. I didn't know this when I was 14.

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My son was on accutane when he was 14 years old. He took it for 3 months, all his acne went away. Would taking accutane for 3 months cause any long term side effects? During his usage he did great, no side effects and lab work was fine. He is now 19 and still acne free. When he gets angry...he gets VERY angry. Is this a side effect? He was always such a happy child, he had a conscience. Never lied...now its bad. At the end of my rope...help!

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Anthony,

I have been away from my computer for a few days, sorry I haven't replied to you questions over where you may find records from any drugs you may have taken. From my personal experience, I believe your doctor must keep you records on file for a specific amount of time. They may not have them in there office, but may have moved them to a storage unit etc until they no longer are required to keep them. Your drug store etc should also be able to go back to look at records as long as they were kept on a computer at one point.I wish I knew how to help you. Sounds like you are on the right track and if nothing else works, you can seek legal advice on what laws may be in your state on keeping such records. Please try to ignore anyone that has negitive responces to this post/forum. Like you mentioned, NOBODY can even begin to understand someone elses situation unless they or their love one may be going through such times. Why do some people get poison ivy when they touch it, or even being downwind from it and others can pick it up or roll in it and have no side effects at all. Everyones chemistry is differnt and certtain chemicals effect everyone in differt ways.

Also remember that drug companies pay people to look for sites like this and will do anything to make forums like this a negitive experience for others. Stay strong and let us know how you make out finding past records. I would bet for some reason or another, there are other people that have been on this site or may look at it in the future that have the same questions you have with your past medical records.Let us know how you make out.

Best Wishes my friend !
Scott P.

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I'm a gastro mess and I took Accutane in my teen years. I am now 40. Diagnosed with GERD at the age of 23. Have severe acid attacks at night, resulting in near choking events. Also have Irritable bowel syndrome. Have recently been diagnosed with divericulosis and may have a peptic ulcer too. I can't say how upsetting this has been the past 17 years. I take prescription antacids daily but I am a risk for getting cancer from these gastro problems and to think it may be from Accutane. It's scarry and sad. I warn anyone taking this drug. To have GERD at the age of 23 and all the all problems that followed makes me think there is a relation to the drug and my problems.

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ex accutane user,

go away. we are happy that you took the drug and are fine. Obviously others, like myself, weren't so lucky. Not everybody was warned about the horrible side effects of this drug. I took the drug when there were no pamphlets given out about the drug. I don't even remember signing anything special when I got my prescription. My doctor only told me I would get nose bleeds and dry skin with no possibilities of long term side effects. I guess I was just a stupid 17 year old to be so naive. I guess it was crazy to believe my doctor when he said everything would be alright. Why are you even on this board posting? Get on with your life. I can't believe you would come on here and say, Shame on you, to all these people who have suffered greatly. You are an a--hole. Sorry for concluding my post like that, but I can't stand people like you.

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Anthony Seeking Help:
You are proving my point in that people just DON'T READ. Why don't you read my original post again, where I said that the undisclosed risks are a problem.

My point is that the disclosed risks, which people accepted when they popped that pill, aren't something to bitch about taking the drug off the market for.

I am VERY cautious when I take meds. Every single medication out there, even over the counter ones has a side effect. If people don't realize that, they're idiots. Most of society today thinks that it's alright to pop pills as a silver bullet like they're candy.

Sure, let's take antibiotics improperly that will create superbugs, sure, let's take birth control pills while I smoke because blood clots could never happen to me, sure, let's pop ibuprofen because a 1/25000 risk of getting gastric ulcers could never happen to me.

THAT is the personal accountability that I am referring to, and if you took the time to actually READ my first post, rather than starting a rant assuming everything is about you.

As a parting thought, I hope you've fully checked out the side effects of the medications you are taking now, so you're not surprised if something else happens.

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That saved differen't than I had it. I put ex accutane user says at the beginning, then had multiple lines between that and my comments. For anyone confused, His name was at the top so that he would know I was replying to him and then the rest of it is my comment. I know it sounds rude, but at this point some of you have no compassion and are far ruder than anybody defending the fact that this drug made them very sick. Go away, or have the ability to put yourself in somebody elses shoes. Your experience is your own and that is all. If you got as sick as me, and still have blood transfussions 20 years later due to this, you would not have the same opinion.

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Ex Accutane User:

I know you are not talking to me?????? I don't remember reading in the booklet about how the company knows about the connection to Ulcerative Colitis and I may get it. Maybe you had a special copy????? Not to mention I took it earlier than you before we were taught all of that.

Good for you for your experience, I am very happy you didn't get sick. I can assure you, that had you got sick like I did and then found out that the company knew it could cause this and tried to cover it up????? well you would have the opposite view that you do now. Shame on you for coming on here and saying I was responsible for reading up on all the things the company was hiding from its customers. You are Naive, and have no idea how those of us feel that have gone through the most dire of circumstances due to this toxic drug. You could never understand our point of view here because you were one of the very lucky ones. How about you take less time bashing those of us like myself that spent the good part of a year in and out of the hospital, mostly in. I also went through many surgeries, some emergency surgeries because I was close to bleeding out. You have no right to come on here and call me nuts. It has been proven in a court of law that this drug is truly connected to people getting UC. It has also been proven that the company hid that fact. Now go back to your crib you child, and hopefully you can come out when you have the ability to understand that this drug causes misery for some and miracles for others. THE PROBLEM IS, NOBODY KNOWS WHICH ONE THEY ARE.

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Now, I understand that side effects suck, but I have taken Accutane for two 3 months trials when i was 18, I am currently a 33 year old chiropractor and have no problems whatsoever from taking the drug.

What completely drives me nuts, is that the predictable long term side effects WERE warned about in the beginning. I had to sign an entire folder's worth of information before I was even permitted to take the it. I had to get regular blood work.
There is a listing of side effects from the pharmacy when you go to pick the drug up!
I'm sorry, but when you took the drug, you knew almost all of the risks.
The other undisclosed risks... yeah, that's an absolute problem, but if you think any medication on the face of the planet is side effect free, you are out of your mind.
I and my parents did extensive research on the medication before I ever started taking it and accepted the risks.
If you didn't, then SHAME ON YOU. People need to start having some personal responsibility and stop blaming others for their own decisions. There is always a chance that the warned about side effects could happen to you.
Just remember, nobody forced you to take it!

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Scott, you handle yourself very well. I would have a hard time being so nice to a few that seem to think we are all making this up. Thanks very much to you for your story and for the story of others on here. They have meant a lot to me.

I need some help as I may be at a dead end knowing how to get my medical records from the early 90's. I am 99% sure I took accutane , and had no idea until very recently that there were so many side effects. I like many of you saw the commercial on T.V. I had many complications including one of the worst cases possible of Ulcerative Colitis you can get. The med's didn't work and I ultimatley had to have my large intestine removed. I still today many complications due to the UC, even though I had corrective surgery. I also had a very bad time with depression and lack of energy, dehydration etc. I don't want to get into all the details as they are many. Anybody have any ideas as to how I can get information back then as hard proof of the med's I ingested??? The doctor that I saw no longer has them. I have requests with both of the pharmacies we used back then but, both told me it was a long time ago and they will try. No guarantees though. I have a request in with the insurance company we're sure I was with but, who knows where that will lead. THANKS FOR ANY IDEAS, even the most stupid sounding may help. Again, I am very happy this message board is here.

For all you haters, the side effects are very real, and this drug destroyed my life, even today I struggle with the complications. Yes, you may have a great experience , and I hope you do. Like Russian roulette, Only one out of six end up dead. I would still very much tell anybody I know not to try that game.

Anthony

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Steven S.,

Thanks for your post. Not sure why you may feel a bit lethargic after taking Accutane. Probably just a natural reaction from lack of sleep, not eating right or possibly just staying up at night leaving post on sites with ABSOLUTLEY NO EMPATHY for others. Hope you feeling lethargic have nothing to do with Accutane. Now, why would it?

To 9Cat,

Thanks for your post! I am happy for you that Accutane had helped you with your cystic acne .Ultimately, everyone on this site were looking for the same results in the beginning. As we all know on this site cystic acne can effect our daily activities, like having are pictures taking in a yearbook, going out in public etc. I am glad that any depression you may have had came from acne, not side effects from the drug you took to prevent and stop anymore cystic acne. As discussed many times on these post, not all people are effected in the same way, and some are not effected at all. I am always puzzled why some people with no side effects at all spend there time leaving remarks here that hopefully have nothing to do with you. Youtube is a great place to leave a negative comment over a artist or the song they write. Most of these remarks left there are also another way people cuss and argue absolutely for no reason at all.

Best Wishes to both of you,

Scott

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I took Roaccutane 11 years ago because I had bad acne. It wasn't severe and didn't cause scarring but was persistant. I took a moderate dose (1 or 2 a day) on and off for many years. It cleared up my skin completely and it was the happiest time in my life when I was taking them but I couldnt take them without a break and once I stopped the acne came back and I got depressed. Acne caused me to be depressed and not Roaccutane. I get angry when people say to ban it because it has helped many, many people. My life in my teens and twenties would have been a complete misery without it. There would have been no hope. Looks are so important at that age. It's always the terrible and usually rare side effects that are always heard about and not the good stories. It's too easy to blame every health problem on Roacctane. I'm sure most health complaints would have happened anyway. All drugs have side effects. Dont ruin it for everybody.

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Just finished 6 months @40ml. A day. Found this thread b/c 3 weeks off the Accutane, I'm feeling a bit lethargic and was wondering if there was a withdrawal period. This is my 2nd round, first was in 1999.
A lot of terrible stories on here that seem a little overly dramatized. Uh, I'm sorry, but Accutane doesn't cause Anorexia and half the ailments everyone on here is going on about. The guy w/ the son hearing voices, come on, really? Your son, may have had psychological problems before the accutane you were not aware of and they were excarerbated by The Accutane. Hello People, iPledge, 5 pages of warnings and possible side effects. Not like you had no warning. Half the things y'all are going on about were brought on by LIFE NOT Accutane.
Did I feel some depression, sleeplessness, moodiness, yes, I most certainly did. I would NEVER PUT A TEENAGER ON THIS DRUG UNLESS IT WAS AN EXTREME CASE OF CYSTIC ACNE. Read the warnings/side effects. If you're predisposed to depression..not for you. If you're a teenager who's brain is still developing w/ hormone swings.. not for you. But don't be blaming accutane because you almost pooped your pants jogging. Drink some rice milk. Oh my arm just fell asleep from typing..ACCUTANE!

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Singh,
Thanks for your post !
Best wishes,
Scott

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I am 19 years old and i started taking accutane a month and a half ago now my eyes are blood shot red and my right eye is swollen. Both my eyes are dry and it pains a lot in my right eye. My doctor has prescribed me artifical tears to lubricate the eyes. I have stooped taking accutane and by doing this my eyes are slowly loosing the redness. I will say to all those who are on this drug STOP TAKING IT IT IS NOT WORTH IT....

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Dear K. I.,
I am glad to hear you are felling better. Thanks so much for posting all the side effects you felt. I believe you. My son to 20 mg in morning and 40 mg in the evening everyday for 6 months. Your case is proof that on 20 mg a day for a few weeks can start a chain reaction of side effects. I would bet just taking it for a few weeks have not permanently done any damage to you in the long run. I am very happy that you are feeling better. Being honest to others about suicidal thoughts isn't easy. Your posting here will let others know they are not alone if they have any of the symptoms you experienced.

Best Wishes !
Scott

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Scott and Kathy - thanks for the advice.

I stopped taking accutane.

While on accutane, I would have trouble sleeping and I would wake up in the middle of the night feeling very depressed and suicidal, but
when I managed to get back to sleep and woke up the next morning, the suicidal thoughts
completely disappeared. So I kept taking accutane. Until the suicidal thoughts crept into my mind during the day as well, and the thought of throwing myself in front of a bus when I was walking in the city was inviting. Yeah, it might sound funny but thinking back to how I felt at the time is truly scary and I wouldn't wish it upon anyone. I felt completely empty, alone and alien. Also I want to point out that sometimes it takes me hours to fall back asleep, and sometimes I never do fall back asleep.

I can't handle 20mg/day, and I can't imagine any higher dosages, especially over a 7 - 9 month period (which is how long my derm wanted me to stay on it). Though I'll point out that I'm 5'0 and weigh really light if that makes a difference.

I think my derm is untrustworthy because he told me hair loss on
accutane is completely false, when it was stated in the booklet he GAVE me that common side
effects include hair SHEDDING. And in the official list of side effects that comes with the pills it states that in rare cases, PERMANENT hair loss may occur.

Can I seriously trust this derm who can't even acknowledge one of the most common, NON-life threatening side effects of accutane (hair loss)?

Anyway... in the mean time I've switched to an anti-inflammatory diet.

I've also called my dermatologist and I'll be seeing him in a few days to explore other treatment options.
I also have an appointment with my GP the day before to get a referal to a different dermatologist for back-up.

I have a feeling that many of the rare side effects of accutane are actually much more common than Roche makes it out to be...

Anyway, to completely sum up ALL my side-effects on accutane for just over 2 weeks anyone who reads this:

- insomnia (every single night on accutane, without fail, I woke up in the middle of the night and had extreme difficulty falling
back asleep, sometimes stayed up the rest of the night)
- suicidal thoughts
- muscle soreness (in my calves, then it also spread to other areas)
- flushing (I don't know what flushing means but my face turns red and really hot to touch)
- body is abnormally sensitive to temperature changes (felt prickling sensations all over my body like someone was pricking me with the end of a knife... but not as painful, then felt my body temp rise suddenly, about to break out
into a sweat)
- eyes sensitive to sunlight, harder to focus (noticed this in my lectures at uni)
- some hair shedding at my temple... I know this for sure because I have a freckle on my scalp that used to be completely
hidden unless I parted my hair and looked for it, but now it easily shows near my temple.
- back of my shoulders are sore, groin pain, and felt jabbing pains at the back of my left ankle
- once I woke up in the middle of the night with a very loud ringing in my ears
- had my eyes wide open in the dark and I felt blind
- it felt like a cloudiness was covering the outer corner of my left eye that really freaked me out. So I turned on my phone to a text message and put the phone to the
right side of me and kept my head straight, and kind of shifted my eyes to the right and I could read the text clearly. I put the phone to the left side of me, shifted my eyes to the left and the text was blurry.

I didn't imagine it, I checked several times. It was always blurry on the left side, and this has never happened to me before. But I don't know how that's possible after being on this drug for only
2 weeks. Oh well, I don't care who believes me, these all happened on a low dose and a very short period... It felt like a thin film was partially covering my eye so I rubbed my eye to get rid of it and it was still there. This freaked me
out the most.

This happened on the last night I took accutane which really sealed my decision to stop taking it.

Oh yeah, sometimes (but infrequently) I get sharp, short-lived pains in my upper stomach (only
started happening after I took the drug)...

I just think I'm one of the unlucky ones where my body just can't handle high doses of vitamin A... I guess to my body, 20mg is a highly toxic dose. I dunno how it works... I think everyone's really different.

Despite my list of side-effects I was so tempted to get back on accutane for a few seconds because I still feel really
conflicted and still not sure if I'm over-reacting. But I think it's best to wait it out until my next appointment.

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Dear K.I.,

I am in agreement with Scott. The suicidal thought(s) is enough reason to stop the medication immediately. Our son still suffers with mental health issues brought on by Accutane three years later. A healthy mind and your very life far outweigh a clear complexion. I would suggest that you do some research on allergies, diet and natural supplements as a way to help the skin problem. I know it is not an easy decision but for me this the only choice is to get off Accutane and possibly get a new doctor. All the best!!

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Dear K.I..
It is , if you are having suicidal thoughts, you need to contact your doctors asap and tell him/her about it. If you have to wait a month to see them again, please call your Primary Care Physican and twll them how you feel. Please let your doctor that your muscles are sore also. These are two factors that the drug warning labels state you should tell your doctor about right away, even if you have to call your doctor and make a early appointment. There are many drugs including accuatne that can effect your moods. These side effects can be stopped by ceasing this medication. They are also early warning signs that accutane may not be for you.Iif you doctor isn't telling you all you need to know about accutane, get another doctors opionion. Allot of these side effects can just be temporary, especially since you have only taken accutane for a short period of time. We will be thinking of you and let us know how you make out. Best wishes ans stay stong, everything will be OK.

scott

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