Accutane Long Term Side Effects (Page 12) (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 After I have researched this drug extensively, I can't believe that the FDA allows this drug originally made for cancer patients to be marketed for teenagers with acne.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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I took acutane back in 07 an only went through with 3months of the procedure, because of ringing ears an severe temper.. now im having more issues since about 6-8 months ago ive been getting welts and rashes all over my body mostly around the neck an face its almost like a burning itching feeling an have some dizzy spells an seem to feel confused sometimes.. what can i do? does anyone have a cure for these rashes an welts?

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To John,
First of all, I am happy that you haven't experienced the extreme side effects of Accutane (that is what I gathered from your post). After all those years it seems you are out of the woods or at least I hope so. I guess my question to you is why are you still researching the long term side effects of Accutane? Is it purely curiosity or have you experienced any side effects from it?
Second of all, I don’t like that you used the word scaremongering in your post. That word implies the intentional spreading of rumors with the hope of scaring people. I, like most of the people who are sharing their negative stories about Accutane, are not trying to scare people. We are simply sharing our experiences. Personally I really don’t care if people still want to take Accutane. I just want them to know what happened to me and what could POSSIBLY, not definitely, happen to them. What good is it if only the positive experiences are shared? I wish I would have known these stories before I took Accutane. I wish I would have known that it was first used as a powerful chemotherapy drug. Instead I listened to my doctor, who assured me that the only thing I had to worry about was temporary side effects like dry skin and bloody noses. Anyway, most people aren’t posting their negative experiences with the intent of scaring people. Or maybe I’m just a little too sensitive about the subject, and I’m overreacting to how you phrased your post.

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To All,

For the record, someone other than me ( named Scott ) posted Post 146. I am the one that started these post and just wanted to make that clear.

Sincerely,

Scott

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Wow. Thank you for your condolences. I wish I had internet back in 2001 as I do now. Something needs to be done about this. I wish we had someone like Ralph Nader fighting for consumer rights. I am going to some group therapy meetings now and will ask around if their kids took this. I will post what I have discovered. I never thought this would have such long term effects. I didn't even know it was recalled. This is a crime!

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Im 14 years old and have been on accutane for 3 months now. When I first went for a dermotoligist appointment, the dermotoligist imidietly suggested accutane. The only side effects he talked about were birth deffects if I got pregnant. My mom and I told him that he didnt have to worry about that because im a virgin and wasnt planning on having sex anytime soon anyways. He didnt seem to beleive me and still drilled all this stuff bout birth deffects into my head. Before i started, my mom asked him if there were any long term side affects id have to worry about, and his exact answer was pregnancy! pregnancy! and he went on about that for a while. Then my mom asked again if there was anything else we needed to worry about and he said no. Now after reading this im realy scared about what will happen for me in the next couple years. If someone told me this in the beginning i never would have taken it...

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Please STOP Allison. They will be doing blood work on you to see how much Accutane is in your body. That is why they take your blood. They are trying to make sure you are saturated in the drug before they take you off of it.

Trust me the long-term side effects are not worth it. A year ago I weighed 196 lbs. I got on the scale after a mild period of inflamation from Crohn's and was down to 168 lbs. I am 6 feet tall. I was going to the bathroom 6-10 times a day and passing undigested food. The only thing I could do to feel better was not to eat.

Went to the radiologist for an Upper GI/Small bowel follow through. I am missing 4-6 inches of intestinal wall. My body is attacking healthy cells and there is no cure for Crohn's.

I have a very large extended family and there is no another family member with any history of an IBD.

Please don't do it. I am sure you are beautiful even if you have Acne.

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@ Dc, Fort Worth :

Your story almost hits me dead on. Effexor was one of the drugs I was on with a few others. I had changed so so severely that my parents realized this. Trust me not sure how I am still alive today. In standardize testing I had the highest Math scores in the whole school pre accutane. Post accutane I would be lucky to remember anything. It is so frustrating because you feel like a dumb ass because you completely blank in front of people. I was not always like this.

I am sorry for your loss.

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I took Accutane in 1984 and have had a life time of problems. Acne is a sign that your body not processing correctly, for me it was too much sodas and sweets. Of course doctors don't tell you that. Today I have UC as well as a scared face where Accutane caused my face to drain so badly that my skin peeled off sticking to my pillow as I slept. Mentally, I had problems for some years, probably still do some, with suicide and depression. I also found I lost the ability to give speeches where as before they were no problem. Acne can be solved without drugs. Most likely you just need to change your diet. Even today if I drink too much soda I'll break out, and that's post Accutane 20+ yrs later.....

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I WAS PUT ON THE MEDICATION DUE TO SEVERE PROBLEMS WITH ACNE, I WAS 27 YEARS OLD. MY KIDNEYS STARTED TO SHUT DOWN AND MY LIVER FUNCTION WAS NOT RIGHT MY SPEEN WAS ENLARGED, I HAD JUNDAIS AND BRUSED REALLY EASY. I STOP THE MEDICATION AND APROXIMITLY 2 MONTHS LATER I BECAME VERY SICK. WENT TO THE HOSPTIAL AND WAS TOLD I HAD CANCER. I WAS BOOKED FOR A BONEMARROW FOR FOUR WEEKS AFTER THIS. I GOT REALLY SICK AGAIN MY STOMACH WAS REALLY BAD. I WAS TAKEN TO THE HOSPITAL AGAIN AND THIS TIME I WAS TOLD THAT I WAS PREGNANT. I WAS CONCERNED BECAUSE OF THE PAPER WORK I HAD TO SIGN, THE DERM TOLD ME I WAS OKAY. I ALMOST LOST MY SON 3 TIMES IN HIS FIRST YEAR. I AM NOW SUFFERING STILL FROM BOWEL ISSUES, STOMACH ISSUES AND ACKY JOINTS. THEY NEED TO TAKE THIS OF THE MARKET, I SEE THEY HAVE IN THE STATES BUT NOT HERE IN CANADA.

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I was given Accutane as a teenager and I never realized the depression that followed could have been caused by the medication!

I don't remember how many months I was on it... but I remember the day the doctor took me OFF of it. I had gone in for my routine blood test (we all went through a LOT of those, didn't we?) and the doctor came in with a frantic look on his face and told me to stop taking the Accutane IMMEDIATELY- to throw away what I had at home. Apparently my cholesterol was 450... I was a teenager with normally low cholesterol. Can you imagine?

I've suffered with some of the same symptoms as other people on here for YEARS. Wouldn't have pointed my finger at Accutane- but now I'm starting to wonder!

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I’m a 33 year old female who was on the lowest dose of Accutane for 3 months. When I noticed my hair thinning in the front my Dermatologist made me stop taking it. He said it may or may not be permanent. Well I’ve been off of it for 8 months, and my hair is falling out even more now. I’ve always had really thick hair and now the hair by my forehead is thinning. It’s so bad you can see holes when I pull my hair back. I am petrified because I wanted to try and have a baby this year. If it makes your hair fall out, what other issues could it possibly cause a year after you’ve stopped taking it?

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My link to download my Accutane research report has expired. Here's my new link where all of you can go to download it.

http:/­/­www.yousendit.com/­download/­YWhPQ3Q2UEM1bmhFQlE9PQ

Email me if you have any questions, my contact address is listed at the beginning of my report.

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Douglas,

Maybe you can help me with a question I have from the viewpoint of someone in the medical profession (I believe you said you went to med school)? From what I know Accutane is basically a large dose of vitamin A or some kind of vitamin A derivative. This is why most of the side effects of Accutane mimic that of vitamin A toxicity. My doctor didn't tell me this, and to my fault I was 18 and put full faith in my doctor. I had never heard of such a thing as vitamin A toxicity, but when I started getting these side effects I did some research on the drug and discovered vitamin A toxicity. Much of the research I have read says that vitamin A in doses of 20 mg or more for long periods of time is dangerous. When I was on Accutane my dosage was 40 mg for about half a year (This was in 2000 by the way). I feel like my doctor should have told me about this. I would have figured any doctor would have known about vitamin A toxicity. Am I wrong about this? How long has the medical community known about vitamin A toxicity? Is there enough research on this topic for a common doctor to know about this? And if this is topic is well known, why do they keep prescribing Accutane in such large dosages?

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Hi Scott, thanks for replying. I thought I went over this in my first post but apparently not?

Anyway, I''m 16 years old. And I've been taking Isotretenoin for the past 6 months and a bit. In which on the last days of my last month that I took it, I started to feel the side effects really coming on to me - it was sort of affecting me on like the 1st to 4th month, but as time went on after that, the side effects got a little more worse and I could feel it.

So I decided to stop by myself about 2-3 days ago.

Oh yeah, and unlike a lot of you here who say that the doctor/dermatologist prescribes you to the drug for a fixed amount of time like 6 months, 7 months, or 8 months, or whatever, I was just given the drug each month, and every time I ran out and my pimples were still on my face, I'd get a new packet provided I just did a blood test. There was no time limit for me so I could stop taking it whenever I want.

Of course I would have not taken it all together had I known all the bad reputation this drug has.

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Dear Ws-yeo:

Yes, that is very unusual for your physician to NOT set a course-of-treatment. Here in the USA, when Roche first came out with it, physicians were to prescribe certain courses of it. Then, after you have completed that course (or time), the physician may decide to place you on another course.

For instance, if you have terribly bad, cystic acne, you might go on a 4 to 6 month course treatment. Then you would completely stop. Hopefully you would see excellent results. A high percentage of people do.

Then, later on in life, you may see that you are developing acne again (not just a pimple or three) and the physician will place you on another course of treatment. I am not sure if what you are taking is exactly the same as Accutane, but if it is, you should absolutely be on a FINITE time of dosing. The reason you do this, is that your skin will continue to heal after you stop taking Accutane. It should not be used like an antibiotic, so you use it when you break out. It is a specific, very monitored treatment.

If your physician is keeping you on the medication indefinitely and it IS the same as Accutane, stop seeing that doctor! He does not know what he is doing!!!

Luckily, I only had to go on one, six-month course. Sure I had outbreaks after that, but my cystic acne was completely cured. Once you have completed your course and you get pimples here and there, your doctor should give you topical gel, or cream and/or antibiotics.

Like everybody says here, each person's body is different. You want a doctor that will be very conservative and only keep you on Accutane for a predetermined amount of time. Then you can be treated with less risky medication, like tetracycline (antibiotic), or topical gels you put on at night.

Really, do not take Accutane indefinitely! That will increase your risks of toxicity so high that it definitely WILL harm you.

A typical physician will not put a patient on another course of Accutane until a year or more has passed. Some people may take Accutane at your age, then need another course of treatment in their twenties, or thirties. If you can manage your acne with other medications after a course of Accutane, always go that route. Of course, you have to make that decision when the time comes. If you have tried all of the conservative medications, with no success, then you may think about another course later in life.

Always remember, RISK versus BENEFITS! But, there is no question that you need to dump that doctor you are seeing now, as he does not know how to properly administer Accutane treatment to you.

Good luck and I hope you will be happy with your outcome.

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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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I had horribly severe acne that left me severely scarred. I took accutane as a 15 year old kid. It helped a lot with the cystic/nodular acne. At 29 I still have 'normal' pimples. The cysts are less common now, but I still get them on occation. However, I now have the long term effects that are all too common to Accutane users. Particularly IBS - my IBS is primarily stress induced, but occationally flares up for no reason. I've learned to deal with it, but I will live with abdominal pain, cramping, diarrhea, etc. for the rest of my adult life. My wife is a nurse at a gastroenterologist office. There is not much they can do for me.
If I could go back I would avoid accutane. At 15 I didn't realize or care about long term consequences. And I don't feel I was made aware of them. I don't think my doctor really knew. I think he was pushing something a drug rep gave him. Medical marketing is a mess. I know my parents wouldn't have given it to me had they known the risks, but neither of my parents are college educated and didn't know what questions to ask.
Now I use ProActive for acne treatment. I think it is great. I wish I would have had ProActive as a teen rather than Accutane. The pain is not worth it. I would not recommend Accutane to anyone. Use ProActive, if that doesn't work, find another treatment and do more research than you think is needed.

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Hi Steven - are you talking about Kangen water? A friend of mine has a device at his house and it does have some pretty great implications. The only thing I found is that it can be cost prohibitive.

Can you please post back with any other details about the water which you are talking about?

Thanks!

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I took Accutane when i was 17 and now I'm 26. 9 years later I have no side effects except dry lips year round. Accutane got rid of my very bad acne and I was/am the happiest person ever. I'm sorry to those of you who had problems. But just so people out there know, it can work and bring on no long term side effects.

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I just finished over 5 months at 40 mg/day for two months and 60/day for three and a week or two. My skin is doing a hell of a lot better although these months of treatment have been the worst of my life in terms of appearance, as my pores have been literally emptying including ones buried deep down in my skin that have been buried for months and months before the treatment.

I stopped medication when I started to get a rash on my ankles after doing exercise (running specifically). A week or two prior to the major rash appearance, I had been noticing my skin feeling very itchy and odd/uncomfortable after doing my cardiovascular workouts. So when the rash came up, I figure it was time to quit.

A few weeks have passed and my pores are continuing to empty (it's almost done) and the skin feeling/rash are long gone.

I am a very healthy person with type 1 diabetes and take lots of fish oil in addition to superfoods, lots of fruit/vegetables and a very high protein diet. I also exercise 5-6 times a week, and have been doing this throughout the treatment despite some weeks of feeling pretty lethargic in the gym (a few times in beginning weeks I had to leave early because of the medicine).

But my suspicion with the many side effects is due to first and foremost using the drug at too early an age, and second a combination of not having a quality diet and healthy lifestyle.

So my suggestion to anyone thinking of trying is to only do it if you are physically mature and have a healthy body. It is not an easy therapy but neither is life with acne. I could probably post some more details or whatever but I think that is enough. We all know the risks but we should all be smart enough to recognize that if we don't take care of ourselves then something is going to get you sooner or later, whether accutane or anything else.

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