Accutane Long Term Side Effects (Page 95) (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 After I have researched this drug extensively, I can't believe that the FDA allows this drug originally made for cancer patients to be marketed for teenagers with acne.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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You are full of it. You have no scientific evidence that this drug caused his problems yet demand it be taken off the market. Do you know how many millions of people have taken this miracle drug and their lives changed for the better, without long lasting side effects? Did u know they also say it works for resistant cases of lupus? My doc put me on it and it not only cleared my painful cyst filled face, but put me into remission... my joint pains and fatigue disappeared along with skin rashes and acne. ..all of which were ruining my life. I took it twice and dont regret it one bit! I highly recommend accutane!

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How can you guys prove that all these side effects are from accutane? Balding can be genetic, but can also just happen! Bloating and cramps are normal. You eat a lot of food, you get bloated. Menstrual cramps or even just heartburn can cause bloating or cramps. So eat right and that will save you from those side effects. And severe dryness is apparent! The medicine dries out everything in your body to make the acne go away and hopefully not come back. Your skin doctor should have informed you of that beforehand. Joint pains should have been discussed at doctor appointments. And IF any of these side effects concerned you, you shouldn't have put your child on accutane. Not trying to be rude, just stating my opinion.

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erm...I've just started taking Accutane...and guess what, no long-term effects have been informed to me, only the short-term. And if Mother's who have their children's best interests at heart didn't research it on the internet, it would be because you have trust in what a dermatologist who is a specialist in that field is telling you as opposed to reviews on the internet that anyone can write that aren't 100% reliable.

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sorry that was meant for the post before yours!

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Shelby,

Diet has no relationship with acne. Before Accutane I tried everything including changing my diet which was healthy in the first place. If you go on acne.org you will see people have tried diets but it failed to help their acne. If you have severe cystic acne just eating fruits and vegetables will not help you. I know there are risks but it is a miracle worker with severe acne when all else fail and there is no guarantee you will get serious side effects.

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I was treated w/Isotretinoin 5 different times. 60 mg/day for 6 months each round. I had to keep switching dermatology Drs. b/c none of them felt comfotable prescribing it to me more than once. BUT IT WORKED so I did whatever it took to have clear skin and stop my face from scarring even more.

During treatment, the only bad side effects I had were dry skin and chapped lips. Depression too, but that may have been due to other factors. Now, years later I am experiencing extreme lower back pain way too debilitating for my age (25). And, my acne is back. It always came back, but this time I can't just go fix it again with Accutane. I'm afraid the side effects have finally caught up with me and I'm terrified.

If I can give any advice, try it once. It really is a miracle drug, but don't be stupid like me. If your ance comes back, don't put the rest of your body at risk again. It's not worth it.

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There is 30 years of study of this drug. Why don't you go on pubmed and read some real research studies. these are much more valuable than peoples individual stories on the Internet the internet. Let's face it this drug has such a bad reputation people are going to blame all their subsequent health problems on them.. This type of anecdotal information is of poor quality compared to the dozens and dozens studies on this drug. If it was dangerous it would be pulled from the market. It is approved for used all over the world we have plenty of data supporting it's safety.

Accutane patients are my most satisfied patients. I have to say that's dermatologist many of them prescribe this drug in doses that are too high because they haven't done the same research that I have and this is responsible for some the side effects people are experiencing. in general and dermatology people regard this drug excellent drug a wonderful drug and they do this because they read the studies and have had good experiences with her patients . You may want to consider that the nothing experts might actually be right right. Seriously go to PubMed and read some real studies you'll be surprised on how safe and effective this medication is

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No field is without bias and there is a certain amount of truth to what you say. This is why I am hesitant to prescribe a drug when it first comes out because the few studies that there are are funded by drug companies and usually contain some bias as you described. However keep in mind if they put out a drug that really doesn't work or is dangerous, it is a multibillion dollar disaster (ex: Viox) However accutane is long passed that phase. There are hundreds of studies from around the world most not funded by the drug companies wit no conflict of interest disclosures whatsoever.. Let's say that all american research is corrupt and biased most studies I have read come from other places around the world. This drug has never been pulled off the marked by the FDA of ANY COUNTRY

I rarely give anyone over 40 mg. As I see from the posts and I see in practice most people go for the maximum dose with a "go big or go home mentality" which I believe is the wrong way to go. In Europe they use lower doses than in the USA and there is not this focus on total clearance and dam the short term side effects".

Honesty, in 9 years I have not met one former accutane patients with experiences like you guys have. And I ask! I want to know! I have many parents who have take the drug who come in with their kids who have acne or they mention that a relative took it and I ask what their experience was. I always ask, what was your experience. In all this time I have had one patient who said their son hand a psychotic break and had to be hospitalized. That's it in 9 years of asking about peoples experience and long term side effects. The research I've read is in line with this.

I'm struggling to understand the disconnect between what I see, what my colleagues see, what the dermatology profession and all the research says and the torrent of horror stories on this website. It's like we are living in different universes! Does anyone have an explanation?? Is it just the magic of the internet and that a small minority of patients can have such a loud and visible voice? I'm sorry to anyone what was hurt by this medication but all measures of reality indicate that the horror stories are an extremely small percentage of total users.

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I would love to see some of the studies you refer to that were published outside the dermatology journals. Please post some links. I am always interested in learning more. I'm sure they are not peer reviewed, so it is just one persons opinion but still post some links and I am happy to see them. You and the other person who responded to my post obviously don't trust and establishment. I'm open minded. The more information the better. Looking forward to seeing your sources.

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Bill,
In medicine when we hear a statistic like," this side effect is rare, it affects only one in 20,000 people" we say wow thats great.....unless you are that one person. It seems you and your son are that one person as well as other people on this message board. Studies are limited by their size, and what they are looking for. They can only be so big and can therefore miss the very rare subtypes of patients who have a severe side effects. Due to the widespread distribution of retinoid receptors it is certainly possible a small number of patients with a certain genetic subtype have real problems with this medication long term and suffer wide ranging side effects. This is something we suspect but cannot prove yet and dont' know how to screen these people out. The questions is HOW DO WE KNOW WHO THESE PATIENTS ARE? THIS IS WHERE I NEED HELP FROM PEOPLE ON THIS MESSAGE BOARD WHO HAVE HAD LONG TERM SIDE EFFECTS!

Since there is no way to know beforehand how a person will react to accutane, unless a family member took it and had bad results the only other clues would be how the person responds to treatment. IF YOU HAVE HAD PERMANENT SIDE EFFECTS FROM THIS MEDICATION PLEASE ANSWER TO ME THE FOLLOWING QUESTIONS. YOUR INPUT COULD POSSIBLY HELP A FUTURE PATIENT JUST LIKE YOU IF I CAN IDENTIFY THESE PATIENTS EARLY AND STOP TREATMENT.

1. WHAT DOSE DID YOU TAKE AND HOW LONG
2. WHAT SYMPOTMS DID YOU EXPERIENCE, HOW EARLY DID THESE SYMPTOMS START AND HOW SEVERE WERE THEY?

Thank you for your help and please be as detailed as possible.

Dr. Steve

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Freely admit is going a bit too far. I'm open to the possibility, which is why I am on this site. Certainly the possible mechanism exists as retinoid receptors are everywhere.

Drugs do have long term side effects. Ibuprofen routinely causes ulcers and kidney failure, birth control pills can cause life threatening blood clots, bactrim (sulfer antiobiotic) very rarely causes stephen johnson syndrome, basically all your skin blisters off and you may die. We know this but frequency matters (not if you are the one who gets the side effect of course) and of course weighing the risks and benefits etc. It is not a black and white issue, it is a very grey issue.

I am interested, Seeking Recognition, give me a number if 1 in x hundred or thousands or tens of thousands of people who get side effects like you did, should accutane be withdrawn from the market. Factoring in of course that it is the only drug that can effectively treat severe acne and a few other diseases. I'm interested in where you draw the line given your experience.

Thanks

Dr. Steve

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stop now the treatment, the sides dont go way

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hi xavier i suffer from accutane sides like you

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How does major surgery for no reason pertain to accutane??

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I'm nearing 58 and have taken Accutane (or its generic substitute) since the 1980s.
In my opinion it is a miracle drug. And well worth - every bit - worth the trade-offs that go with with its use.

The emotional pain one must deal with suffering problem skin is every bit as debilitating as the physical pain. In truth - in my opinion - worse much worse - low self-esteem and depression. Accutane has allowed my me life and while that may sound like a dramatic over-exaggeration, it is not.

So yes Accutane is a serious drug but while using it, it has in my case completely kept in check the withering psychological difficulty faced suffering the scourge of problem skin.

My dermatologist has recently retired and the dr who took over patients will not continue the - admittedly unconventional - treatment program used (60 count 40mg Rx used 2-3 times/week as needed & refilled 2-3 times/year.)

I now use a topical Isotretinoin that that does not work nearly as effectively and this does effect my ability to live my life free of the frustration problem skin causes.
We all have our problems tho, I realize.

Thank you for reading this. It is to respond to all the negative posts and offer at least one person's successful experience. I hope to be able to find a new dermatologist but to date haven't. In the meantime it is a day-to-day struggle to deal with. Peace and good luck to all of us.

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Thank you for your response; I am sorry to read of your difficulty. I must say tho I've exercised regularly over the entire time I've used Isotretinoin - literally decades - w/o any joint discomfort. Dry lips are the only side-effect experienced and easily addressed with chapstick.

I of course take all who have reported negative bone & joint effects at their word but only report my own experience that that is not the case.

In my opinion - admittedly one of someone perhaps not as emotionally strong as most - the psychological aspects of problem skin are EVERY bit as much the difficulty faced as the physical part.

While on pill form Rx, it is not an exaggeration to say Isotretinoin completely defeats whatever bacteria that cause the trouble. Presently the only available Rx offered - by my present DermDoctor who has taken over my retired Dr's patient load - is topical and every morning new flare-up (or 2-3) show. It is both frustrating and disheartening. And effects my attitude of getting thru the day SIGNIFICANTLY.

It is not an exaggeration to say my psychological well-being is directly 100% correlated to the condition of my skin. Superficial on my part? I can't quarrel that but it is also truth.

I am fully aware of the serious nature of the drug Isotretinoin and am MORE than willing to accept the trade-offs involved with taking it. I have been doing so - again - for literally decades.

I doubt I am the only person suffering the scourge of troubled skin who feels this adament about the benefits of long-term use, it but if so, so be it. I don't know who even reads this chat thread as I only found it yesterday. It does provide an appreciated outlet to discuss or at least write about living with this debilitaiting condition. (Altho as I say most all people must cope with some physical ailment)

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"In most cases your spots will all be gone for a good 20-30 years +":

I didn't express myself well: I meant THE SCARS, Accutane prevents permanent acne scarring, but it has no power to induce a long-term remission of acne: more than one treatment course are often needed, there is however a remission after physical development (18-20 years), accutane anticipates this remission with long-term esthetic benefits in terms of scarring. But acne could come back sometimes: I know some people in their 40s with acne, this is why a friend of mine did 4 courses and still has spots, but he suffered no side effects.

Isotretinoin is generally well tolerated and was taken by millions of people: this site doesn't make any statistics about this drug. It looks like that there are only doctors here, or more probably people that speak like doctors about "DNA methylation patterns, etc." without knowing the underlying biological structures and processes, they speak because they've read something on the web and try to put things together.

And remember that research is not science YET, because many researches contradict one another, so this "encyclopedia's-worth of scientific evidence" doesn't exist.

Isotretinoin is not a terrible, horrific, devastating drug, it's a drug like another one in terms of risks, this is the message that I want to spread.

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I have just completed 8 months on accutane and yes my lips and eyes are dry, I've had some pain in my heels but this is what you get warned about. My skin has cleared up fabulously and you are only likely to suffer anxiety/depression if you have a history of it. I've had no problems on it and it was worth trying it to rule anything else out. Whether it worked or not I could stop trying all sorts of skin potions because this is the daddy of all acne treatment. Luckily for me it has worked and my spots might come back yet for some people they do for some they don't. It has the same dangers as any medication that you put in your body. Just be sensible and aware and you'll be fine. You can always stop and talk to your doctor if you're really unhappy at any part of your treatment

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Yes to ibs and joint pain.

Sam-e

And COPPER. Your son has a copper deficiency from accutane. Get a rbc blood test done. 1.5mg Cu 2x a day.

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You have a histamine intolerance that causes the flushing. Copper is needed to metabolize histamines. Anemia most likely because of the same copper deficiency. Please get a rbc blood copper test. Accutane up regulates ATP7A...depleting the cells and liver of copper.

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