Accutane Long Term Side Effects (Page 73)

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 After I have researched this drug extensively, I can't believe that the FDA allows this drug originally made for cancer patients to be marketed for teenagers with acne.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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First of all, your doctor should have given you all the information along with the side effects of the medication. By law, you must Pledge to follow as directed and have monthly lab work and visits with the doctor, especially to discuss any side effects. I don't know what kind of doctor you took your son to that would prescribe 60 mg. for the full 6 months of treatment. I used Accutane 15 years ago and am using it again for a different problem and neither time has my doctor given me the max amount to start out with and use the full treatment. So you putting your message out into cyber space just shows that you have no idea what you're talking about. You should have read all the information on this drug before having your son use it.

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Talk about a bogus response, Bertha 57. Not only did you assume that Scott was irresponsible enough to disregard information provided with the drug but also put him down for sharing legitimate and honest concerns. If you did any basic research of your own you would come to realize that the many of the prescriptions handed out by your every day dermatologist are around this dosage and the same duration.

This thread was not created to bash those who followed a doctors's recommendation and took a potent and harmful drug without enough information. Have you bothered to even read and realize that some who have taken this drug for merely a few weeks have dealt with ongoing problems? No one here is saying accutane is the definitive, 100% cause, but it's not exactly hard to put two and two together.

All I can say is good luck taking a second course. Hopefully you don't end up suffering with problems many others here believe to be attributed to the drug. But, whatever. None of this chat matters since we are just sending out messages out to cyber space, right?

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You missed my point, everyone is different. And our bodies deal with medications differently. It sounded like the Mother and young man weren't given any paper work on the side effects. My doctor told me and made me very aware of the side effects. The patient can't blame all the wrongs of the medication on their doctor. I apologize if I offended anyone. I personally have not experienced the horrible side effects. I have dry lips and nose but my lips are far from splitting open and bleeding. I use ointment on my lips during the day and in my nose occasionally. I'm on my 4th month at 40 mg. twice a day so it doesn't have the effect on me as it may have had on you or another person. This is true about any medication anyone takes. So don't take offense to me voicing my facts.

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Anthony,
I would be glad to pass early signs of gastrointestinal issues. I have mentioned them before but you would have to do allot of reading to find it. On his 5 month of Accutane he became very ill at a high school sporting event. He almost passed out competing while in a track event. We rushed him to the ER only to find out he had been bleeding form the bowels for a week and never told us. He had lost a significant amount of blood once we reached the ER. We followed up with his dermatologist which she wrote a report to the manufacturer of Amnesteem. I still have the letter from manufacturer of Amnesteem admitting his blood loss was due to the medication drying out his colon. We followed up with Children's Hospital in Pittsburgh Pa. His bleeding ceased about two weeks after stopping Amnesteem. He still continued having random blood in his stool which lead to a emergency colonoscopy being done. Due to having an eye infection at the same time and was diagnosed as Uveitis (an auto immune disease ) Dr said to prepare ourselves for either Chrons Disease or Colitis. His results where negative for either. Doctors were than and now unable to find a reason for occasional blood in his stool. My son went from H.S. Tract right into football while taking Amnesteen for 6 months. He never seen a doctor at dermatologist office, only her Physicians Assistant. We later found out that anyone taking Amnesteem ( Accutane etc. ) should NOT be active in sports due to not knowing the difference between back pain from sports or the medication. 20 mg in morning and 40 mg of Amnesteem at supper was what this doctors office prescribed all patients my sons size at the time. I have also questioned if he would have taken a smaller doze for a shorter period of time, he may not have had all the long term side effects.
Your question was " what has he done to help him with his symptoms? He has had, Full Body Bone Scans, XRays, Cat Scans, MRI's to name a few. He drinks about 6-9 bottled waters a day because he is always dehydrated, even a water before a cup of coffee in the morning. He has tried the Candida Diet which was helpful. He has to be very careful what he eats and knows what foods to stay away from. He is a tough young man that keeps to himself allot. Although he has not been diagnosed due to not seeing a doctor for awhile, He has all the symptoms of Celiac Disease like so many others on here. I hope that helps
Scott

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Hi there u guys.. I was wondering how much u pay for the stuff you are using as it seems it is not available in UK .. Does anyone know if i would be able to find some outside of the UK?

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No, I didn't. I think you missed the point of the entire topic. The primary discussion deals with the fact that this 'medication' being on the market is highly questionable. In the initial post there was no blaming of a doctor that prescribed it, not even a mention. The point is that Scott (and others) are curious as to how this drug is still approved by the FDA.

Hundreds of medications are available, many with side effects of course, but seems like only few that are as heavy duty and as widely prescribed as isotretinoin (admittedly conjecture).

You appear to be fully aware of potential side effects and even taking a second course. Why so quick to point the finger at others? We should ultimately be held accountable yes, for making the final decision. The stigma about side effects always makes patients feel they are minimal or extremely rare. It's an afterthought. So it's unfortunate we have built so much trust in out pharmaceutical industry. Who cares if we feel like s*** as long as the government makes a fortune. And yes there are synthetic drugs that really do help us and save us so I am not discounting everything.

I believe for every good doctor there is one that is, well, not so good. Prescription drugs are rampant. It's just common sense to me now that healing the body as naturally as possible is the best way to ensure proper health for the future. As much as people are different, it's clear to me this thread wouldn't be nearly as long if we didn't share many similarities as well. Once again, I am glad you feel your side effects are not affecting your life much, but sad to hear you have decided to poison your body again for half a year. Best wishes.

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Sorry.. I was asking about Protandim. You cannot find this in the UK..
And actually my son asked if he got hoint pain while on Isotretinoin how ling would it last ? His Dermatologist said he could gaurantee once he stopped the meds the joint pain would stop ! Which was far from the truth ! My son was training to be a Top Athlete in his field and now has no life thanks to the Derm not being truthful and these horrible Chemo Drugs. So Yes i do blame the Derm as well as myself for what has happened to my boy . He was 16 going on 17 now he will be 20 early 2014... He has suffered for nearly 3 years along with myself and my other children . This has had an effect on the whole family unit. We cannot do anything as a family ie; watch a movie at the cinema or go bowling etc ....

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If you can't get it there in the UK you could also find it on amazon

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Hi Anthony,
I agree with your statement ( #1451 on post ) 100 %. I could not have said it better. I don't let the people bother me that come on here just to try and insult others. Luckily for them, they , at times, look like an ass for their remarks. Fortunately for them, sounding like an ass is much better than having to deal with any long term side effects. I was told the same as you from the dermatologist office, any side effect that your son may get will go away right after the treatment is done. This was the quote when asked about long term side effects...... ( from Physicians Assistant ). "With any medications, there are possible side effects...I have treated over 1000 patients and read hundreds of books on side effects from Accutane and I only ever heard of one case of a possible side effect. This was due to patient already having depressed episodes in his life and not telling the doctor prior to taking Accutane. This was the reason the medication was stopped during his treatment when he claimed he was depressed from Accutane". We signed the I PLEDGE contract after that statement. I will regret that decisions for the rest of my life.
Best wishes,
Scott

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ORGANIC VEGAN RAW FOOD DIET CURES ACNE as well as Accutane side affects!! i took accutane when i was 15 for 6 months, long before i knew of the health benefits of raw food. during accutane i suffered all the 'normal' side affects ie. cracked lips etc. im now 26 and for the past ten years i have had so many health issues which i believe are related to taking this horrible drug. I have severe joint problems, horrible back, neck and knee pains that even prevent me from sleeping. i was also diagnose with IBS, reflux, and Gord disease. One year ago i started on a 100% vegan raw food diet. i also immediately ceased all current medication. one year on and i no longer experience any of these horrible side effects. i have also found out since that this same diet itself cures acne in the first place!! if only i knew that when i was fifteen!! please if you are a parent considering putting your child on this drug, for their sake, try this diet FIRST!! you will save them from a life long nightmare of pain, hospital visits, and dangerous post medications!!

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For anyone interested in a raw vegetable diet. Please check out The Gerson Institute.

Scott

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This is the worst nightmare drug ever the accutane , experienced two back operation. cataract, low libido and other complications. wow be warned

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I took accutane like 5 years ago. I hade mild to moderate acne. But my self confidence took it to desperate and drastic decisions. So despite reading all of the information, weeks of reading up on the side effects and watching "accutane is posin" videos online. I went through with my treatment. Not pressured by a doctor, souley under my own will. Instantly everyone around me noticed I had changed. I was not as aware of the change in my thought process or actions as everyone else was. There were scary parts during my course. Of course the major increase in breakout at first was horrifying. But I had issues with my back as well. Severe pain sometimes. My back was already messed up and I'd had a surgery when I was 21 prior. I barreled through anyways, blood work came back good so.....whatever. In the end my acne was a memory, but my skin was more prone to scarring when the occasional pimple does emerge. Easily flushed face, joint soreness, strange heart sensations, and the erratic emotions and mood swings. I spent a few years as a wreck. Looking now more like I wanted, but the enjoyment of it taken away by the side effects, too many to list in their entirety. In retrospect I am ashamed I took it. Because the real problem was never the acne, it was my self image. It's the real killer in all of us and your children. Feeling like I could never enjoy life to its fullest without needing to look a certain, what a joke. Blame modern society, blame accutane, blame Hollywood and the music industry, yes. But the number one person to blame is yourself. YOU did this, YOU wanted this, as did I. And now this is the life you live.

BUT!!!! Accutane gave me something I am very greatful for. I learned through years of brooding and crying and feeling let down and sold short.........f*** it! What does it matter. What does it matter what anyone else thinks about anything. The truth is it DOES NOT! I have a beautiful son, a beautiful fiancé, a home, I work hard, and I do it all through the disadvantage of my situation. There is nothing better for your self esteem than being proud of yourself. Truly and deeply proud. Never give up, never back down, stand your ground. Be convicted and strong. The black voice inside your head that says your ugly, says you can't and you never will, it's in us all. And it leads us away from ourselves. Then We do what we do, in our case, accutane.

Over coming this is something I can be most proud of. You can still live a good life. Don't you DARE sit around and feel sore. I have all the same crap everyone else does. But last year I completed 2 courses of "insanity" the exercise program. Best shape of my life. Look damn good too. Make the best with the decisions you have made. Life is good and beautiful. Forget what MTV, Hollywood, and popular culture says about what you should say do and look like. They are the cancer destroying this country and it's people for more than 50 years. Get up, get out and live it!

Years of experience taught me this (remember my side effects are bad)

Facial dryness- Burt's bees "daily moisturizing cream" it's the ONLY one that delivers on what they say. Does not cause redness and is NOT SHINY or greasy!

Scalp dryness- motions"oil moistureizer hair lotion" leaves hair soft and scalp moist and feeling good. It's a mess when it's on but wear a hat that day or just use at night.

Mood swings- ask the doctor for a SMALL dose of diazepam. Takes the edge off and brings you back to reality. Away from the scattered world in your subconscious.

Sunburn- wear sunblock duh! Cetaphil makes a wonderful facial lotion that you can use on a day in the sun. Just forgo the regular moisturizer that day. But return to it after and even that night. It seems to be not so great long term as far as other reactions.

Joints-EXERCISE!!!! Not exercising is any health condition is the worst decision you can make. You WILL feel better when you are done. Do it everyday! Drag your but out of bed and just suck it up!

And over all just live healthy! Go the extra mile to ensure you are getting the best diet and supplements you can for your body. Hemp hearts, pea protine, V8, naked drinks, raw fresh everything. Let your body do what it was intended to do by giving it what it REALLY needs to do it. And stay positive an happy.

Live and love life and be the best you. The worst side effect of all is that voice in your head. Give it the finger and have the courage to be happy.

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Hi, I had exactly the same urticaria, at the third month and still after 2 month since I stopped taking it. could you please let me known if and how you solved it?

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If you're having any colon problems due to having taken Accutane[Isotretinoin] then try to eat some unprocessed honey every day. Among others, the actor James Marshall sued Roche over Accutane-related disease that resulted in the removal of his colon. Best of luck and good health to you!

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Scott and Anthony,

You are asking why this medicine is still on the market because you do not understand how bad acne can get. We are not talking about run of the mill acne or even ordinary severe acne. We are talking extremely disfiguring acne that is painful physically and emotionally. Before Accutane this type of acne was truly hopeless and it's victims suffered greatly. I experienced this type of acne before Accutane and it was untreatable until I given Accutane in 1983.

If you are severely disfigured by acne your quality of life is affected very negatively. People with acne face social stigma, emotional pain, and physical pain. The social stigma that people faced was terrible. Some of the first takers of Accutane had acne so disabling that they couldn't even find jobs because of their appearance. Many people could not stand to look at themselves in the mirror. When you go out into public with severe acne you often endure stares, looks of disgusts, and cruel comments from strangers. You lose all your confidence and cannot even look at the opposite gender. A person with severe acne is twice as likely to have suicidal thoughts as the general population. It's truly devastating and the victim needs the most effective treatment possible. I know there are risks but if you are so disfigured that it is affecting your quality of life then you should be able to take those risks. Like someone posted earlier you can say the same thing about face transplants. These surgeries have a high mortality rate and the medication raises your risks for many diseases but the people are willing to take the risk so they can have a normal life and not be a sideshow attraction every time they step out of their house.

As far as I am concerned I did get IBS and some joint pain ten years after my last dose of Accutane so I can't be sure that Accutane was the cause but even if was the cause I still do not regret taking Accutane. The problems I have now pale in comparison to what I went through when I suffered from acne conglobata. When I suffered from my severe acne I would be in extreme physical and emotional pain. I had cysts all over my face and upper body. The cysts would hurt anytime I would try to move my face and when I tried to lie down the cysts on my back would be excruciating. I would sometimes wake up with blood and pus on my linens. To make it even worst sometimes my cysts grew to the size of quarters and they had to be drained by a doctor. Even when cysts drained by themselves it could be a problem because sometimes a cyst would start draining at anytime including while out in public. As bad as the physical pain was the emotional pain was a lot worse. I could not bare to look at myself in the mirror and felt disgusted at myself. Whenever I went out into public it was like I was a side show attraction. People would stare, give me looks of disgusts, and sometimes say horrible comments about what my face looked like. Sometimes my face was in such bad shape that children would cry when they would see me. As a result I transformed from a very outgoing person to almost a recluse that barely left my house. After living that hellish life for five years Accutane was truly a godsend for me. To me IBS and some joint pain are small prices to pay to be able to look be able to look in the mirror, to be able to out into public without being seen as a freak, not experiencing pain in my face and upper body, and not waking up some morning with pus on my bed linens.

I am sorry for your side effects but the patient should be able to make a choice whether of not Accutane is worth it. A person who suffers from the worst kind of acne should not have that choice taken away from them.

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Daniel,

Thank you for your well-written and honest response. You raise some very valid points about the most severe cases being treated by accutane. So I don't disagree with you in that regard. The issue in my eyes, and I guess I never clarified, but the drug is prescribed for a lot more than just disfiguring cases now. Perhaps in your circumstance, and a girl named Brittany who shared her story here, have a much better case for using the drug and also tolerance for dealing with side effects. Severe, moderate persistent, and probably even some mild cases get accutane prescriptions.

I'm sorry if I come across as blunt or rude by saying this, but I do understand how bad it can get. I can't fully empathize because I wasn't one of the most severe cases, but there were a few points where I was pretty bad too. Bad to the point where it decreased my self esteem and confidence as well, but honestly I haven't felt more down than I have in recent years, even with clear skin. I believe accutane can potentially affect brain chemistry and other bodily functions that inhibit appropriate levels in the brain. It's no coincidence that Roche warns of suicidal thoughts and it just so happens people develop severe depression and even kill themselves because of it.

So let me restructure my initial thought. I believe this medication and prescriptions are highly abused and mishandled in clinics all over the world. It's become too much of an afterthought prescribing the drug and people who probably didn't need it in the first place are now suffering from problems just as bad if not worse than before treatment. I am happy that you are doing better and coping well with side effects. But as you said this is all relative. What I am personally worried about is the continued worsening of many of these side effects that will lower my quality of life before I even reach the age of 30. Hell, it already has. I can almost guarantee there are people who suffer from debilitating bowel problems large in part due to this drug and it makes going out in public awful as well. As I mentioned once, I already feel twice my age. So Daniel, it's tough. You're right that accutane can successfully treat the worst cases of acne. But for every extremely severe case treated there must be hundreds of cases in comparison where the medication will ultimately do more harm than good.

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Daniel,
I can understand after hearing your story why Accutane helped you more than hindered you. I only wish that doctors would help educate patients on dangerous medications and let them know," I understand where you are coming from, this is a chemo drug I am giving you for your acne". . Then decide knowing the truth up front, which no one( patients) knew back in the 80's. The overuse of these drugs prescribed to teenagers as a miracle drug with no other alternative and not letting the patients know the risk are much higher than they let on, with no honesty about them slipping you a Chemo drug for brain cancer is what is not fair with the system. Yes, I do believe you and it must be hard to talk about. I appreciate your comments and wish you the best. For anyone with debilitating acne etc or cancer., the choice to take Accutane as a last alternative may be all that is out there. I can only hope that Holistic Doctors and others will give some hope to try different non prescription dangers meds for help that most were unaware of in the past.

What makes it tough for me is knowing I made a decision as a parent for one of my sons to take a very dangerous drug for his acne and not being told the truth about the side effects short and long term 10 years ago. The internet has made it possible today to research things we would of never dreamed about years ago. A doctor that just believes ONLY what he reads in the medical journals and pharmaceutical company's padding his wallet while they spend millions of dollars in Washington D.C. paying lobbyist to hands full of cash to turn their heads the other way. The FDA has not become more transparent due to billion dollar pharmaceutical company's writing the books that doctors study from.

Thanks again for the post and I hope you stay with us to give others that may be in your shoes some comfort in their decision making.

From the Heart,
Scott

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Scott and Anthony,

I am glad you took both time to reply to my post. I wish you both the very best and Scott I hope your son gets better. Scott you are right about the greed part. I just did some research and I discovered that many who have posted on here are right. They are a lot of prescriptions going out for moderate or even mild acne. I guess Roche couldn't make much money by restricting it to only severe or extreme cases of acne since those types are uncommon. I may not have known a lot about the drug in 1982/1983 but my doctor did tell me that it was a new drug that used to be used on cancer patient and that it was very strong. In my case my acne was so painful and disfiguring that I am still much better off today than I would have been if I hadn't taken it. Acne conglobata is notorious for lasting for over a decade and for leaving the victim severely scarred for life.

Scott,

How severe was your son's acne? Mild, moderate, severe, or extreme like mine's was? I am just curious because it seems that a lot of people are getting it for less severe forms of acne. How much did it affect his life?

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I took Accutane during my first year of college. Pre-accutane I was a straight A student. I graduated valedictorian of my class and literally never had to pick up a book at home to study. Since that time, I have struggled through college, failing two different levels of nursing school. I can't explain in words how different everything seems inside my mind since Accutane. Memory loss and lack of concentration have been a huge issue for me in Nursing School. I also lock my keys in my car and/or my apartment least twice a month, which had maybe happened once EVER before Vyvanse. I also suffer from major depression and mood swings. I have terrible night vision, and had perfect eyesight before. Pre-Accutane, I was a perfectly healthy child, rarely even getting a cold. Since Accutane, I have had numerous doctor visits. I had SEVERE tonsillitis, and two emergency surgeries for bleeds post-tonsillectomy. I also have bleeding/bruising/ clotting problems. Once, I even had up to 20 bruises on the back of each knee just from crossing my legs sitting in class. I also have frequent bloody stools. However, according to bloodwork, my platelets really arent that low. I also suffer from lower back pain. I don't know that my issues were caused by Accutane--all I know is that I haven't been the same since I took it. And yes, it's easy to say "wow, you're dumb for taking it after having to sign a consent form" and all of that, BUT I feel that sometimes dermatologists are misleading. I don't feel that my dermatologist tricked me on purpose or anything-- I truly believe that he honestly thought that the reports of depression/suicide attempts were just "coincidental." He used the example of someone eating m&ms and then committing suicide, saying that they could always blame that on the m&ms, but the suicide and the m&ms could easily have no connection. He also said that he thought that if anything, depression would be less likely since the lack of acne would boost my self-esteem. He was right--my self-esteem improved drastically at the time, BUT if I would've known the long-term effects, I feel certain that I would've reconsidered signing those consents. And as for my mom, she said she couldn't sign those consent forms, because she couldn't have that weighing on her later if something went wrong. She asked me to make the decision on my own. I'm not one to sue and maybe the whole thing is just a huge coincidence, but I think the decision is HUGE and should not be taken lightly. I've never even written on a public forum like this, but I feel strongly enough about the topic to throw in my "two cents."

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