Accutane Long Term Side Effects (Page 24) (Top voted first)

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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 After I have researched this drug extensively, I can't believe that the FDA allows this drug originally made for cancer patients to be marketed for teenagers with acne.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?

1933 Replies (97 Pages)

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176

Again, with all medications, you have to weigh the risks and benefits. When I took Accutane in the early 80's, I had tried everything; two visits a week to a Board Certified Dermatologist, antibiotics, Twice a week dry-ice, skin peels, twice a week UV light-therapy and I did completely change my diet. I never ate chocolate, sugar, or anything else that was processed. Being a son of a Hospital Administrator, I was lucky to have many opinions prior to my decision to take Accutane. Every single body is different and will react differently to the exact same things. For me, the only thing that would lessen my acne, was reduced stress. Unfortunately, when you are in high school, preparing to graduate, taking the SAT and starting pre-med, there are limited stresses you can control. At that time, the research spoke about certain people being sensitive to certain food products. For instance, some people would break out when they ate chocolate, as their body responds poorly to the ingredients, while others have no problem. In my case, I tried everything physically possible to stop my cystic acne, the pain was terrible, it was embarrassing to the point that I was completely not social, people (including adults) would consider you dirty, or make fun of you. Again, it is a very difficult issue. Maybe you could compare it to Chemotherapy; for me, I would have taken the side effect, just to have a normal life. Many children used to commit suicide due to terrible acne. I could understand that. What I am trying to say, is that there is no single, correct answer to dealing with severe acne. Of course the physicians are obligated to warn you of the risks and potential side effects, however, in the end, I was the person living day to day with this terrible disease. I chose to take the risks, which were known at that time, for the benefits. There really isn't a medication that is prescribed, when you have to decide if the risk is too high for you. Again, I truly believe that is is the prescribing health care professional to tell you all of the side effects, but when a drug is new, they do not know what long term effects may be. This is true with any new medication. A perfect example would be Lyrica; you see all of these butterfly ads by Pfizer, yet I would not prescribe it to a single patient, from the research I have done. It has not been out as long as Accutane, but is reporting very serious side-effects (both short and long-term). Medication has always and will always be about the benefits outweighing the risks. The real problem is when the manufacturer knows these risks, but does not tell you, because they will make billions of dollars and have to pay only thousands in law-suits. To them it is like paying insurance to generate those billions of dollars. It is a shame, as there needs to be better transparency of the research done, yet drug manufacturers generate so much money, that they always get away with it. In this case, it is Accutane. As I posted earlier, I am a lucky one, as I have not experienced the long term effects, but that absolutely does not negate the fact that many other people are suffering. The drug companies need to be held accountable and will not, until they stop their huge lobbying in Washington and their donations to the politicians (thank you Supreme Court).

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177

Hello all. Well Douglas, I , like yourself was one of the original takers of accutane. I took it about 27yrs ago for the same reasons you did and i heard about some longterm effects (actually from a tv program) and thought i would look up the longterm effects. Now i do have a lot of joint problems and mood swings but i thought it was caused from all the sports i played..hmmm..as for scott yes it is terrible the side effects that you are seeing but like douglas the medicine changed my life..i wasn't that ugly pizza faced kid that everyone beat up and teased..the only real side effect the doctors told me about (hell i was only 14 at the time) was to not get pregnant..i am a guy so it was just a running joke in the office between me and the nurses..but believe me i am reasearching the longterm effects so i can be well informed..esp now that i am a nurse and study natural medicine..well good luck everyone and again only take it if you need it..

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179

Carol-ann,
May you get well at God's speed. My prayers and thoughts are forever with you !

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180

I took accutane in high school and suffered from severe joint pain. My knees hurt so badly that I could barely walk at points. I had depressive thoughts at times as well.

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183

When Accutane was recalled in June 2009, was it mentioned on national news or newspaper? Was it mentioned on the internet news front pages? I only ask because some people found out from TV commercials about lawsuits. I found out from this forum it was recalled. Just wondering how the news was released. Thank you for your response.

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184

Dear DC, Fort Worth,

The makers of Accutane, Roche Pharma, pulled Accutane of the market in a I recall right, August 2009, This was the same time a huge law litigation was going on in Pittsburgh Pa over a teenager that at the time, a few years back had went on a hunting trip with is father, came back and met up with his cheerleader girlfriend, took a ride with her and accoDC, Fort Worth, rding to the boyfriend flipped out on his girlfriend for uncontrollable reasons and stabbed her multiple times till death. His lawyer tried to say the cause of his wreck less behavior was due to him prior to that night of have been prescribed Accutane which caused severe depression. Roche Pharma pulled Accutane complete off the US market to days prior to the court making a decision. He was convicted of murder. Also at that same time Roche Pharma had just lost their, I believe third or forth case in court concerning Accutane was proven in a court of law to have caused Colitis and Crohns Disease which prior to that Roche had denied any wrong doings. I believes Roche has to pay around 33 million in settlements within a short period of time last summer. BUT Roche used the excuse that the generic brands of Accutane had hurt there market shares so bad that it was no longer profitable to keep Accutane on the market in the USA. So for some unknown reason Amnesteem and another generic brand of Accutane remain on the market with the same side effects Accutane has been proven in a court of law to cause Colitis and Crohns Disease.

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185

Thanks, Scott. I bet a news story like this one was on CNN or FoxNews. We never saw it, but I wondered if our son had.
And as for J. Halsey, take your son to a sleep specialist. Our son was put on a low dose of high blood pressure medicine as well (propranolol), and he said he couldn't sleep well. Know what your son is taking and the effects. Drugs.com is a good website and you can look up drug reactions and interactions. Make sure your son knows not to drink on certain medications (or take anything else). He will try to fix the problem himself if he doesn't get help, as in high energy drinks...it will just mess his system up. First try natural ways to remedy the sleep problem too, a soothing fan, completely darkened room... you get the picture. Good luck.

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187

i had accutane in august 2007 and till date am suffering from acnes...this medicine is really bad and it ruined mah life to some extent but now as i have started taking homeopathic medicine my life got changed and now days am really happy thx to mah doctor

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189

Oh and forgot to add, your doctors don't give a s*** about what could happen to you. As long as your going back to them and they are getting paid. Its a business too. I have learned that.

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190

Annna/188 : My husband and I made the best possible informed decision about our son taking Accutane. In May of 2001 he went to a dermatologist because be was hiding behind his baseball cap due to chicken pox scars (he had them in 6th grade) and acne. The internet and the assorted internet sites were not very well established for us at that time. If being sensitive was the underlying problem then that was the only quality in his personality that was flawed. (In this world, being sensitive can be a blessing and an appreciated trait too.) The doctor told us this drug was like a higher dose of Vitamin A. He said not to give him multivitamins and avoid lots of exposure to sunlight.That is it! He never told us it was also used as a chemotherapy drug. He never told us it was dangerous and strong drug. My gosh, I would have not given it to our son!! I have kept good records of all his visits and the information we got when he was first given the drug. The very first information sheet we got from Merck Medco stated on what Accutane is...is a form of vitamin A. It decreases the amount of sebum (oil) that is released by your sebaceous (oil) glands, and it increases that rate at which your skin renews itself. Sounds pretty mild, huh? Should I have researched Vitamin A up further? I know about Vitamin A. It goes on who should not take this drug. We had no mental illness in our very large family. No suicides. No liver diseases. No depression. No psychosis. Diabetes was far removed in the family, but our son was getting blood tested every six weeks. We weighed the effects and warnings. He did well on it, as far as we knew at the time. He dropped off swim meets because his muscles ached. I told him that was okay. He continued on with life. He was an easy going good kid. At 17 his skin was clear, but the chicken pox scars were still there. Not many though. He was diagnosed with panic attacks which now I question. I can't ignore what he said in his last letter...it all started when I was 17 when he was on Accutane. His healthy and growing brain had chemotherapy when he was 17! I wasn't informed and would have never had him on Accutane.
So my concern are the long term effects. Annna, I read every single one of the warnings on each and every drug our kids get. I look everything up. I eagerly seek to be an informed mom. You have to be now. In 2001 through Jan. of 2003 we were not given the truth. Please understand that.

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191

Anna,

I am happy that Accutane was a positive experience for you, but don't assume that everyone who has suffered from this drug had problems before they took it. I was great before I took this drug in 2000, and then my life and health fell apart. Also, don't assume that everybody was fully informed before taking this drug. I took Accutane in 2000, before IPLEDGE, and trusted my doctor when he said I would be alright. The side effects of this drug were not always as publicized as they are today. My doctor told me all I had to worry about was dry skin and nose bleeds while I was on the drug. He told me there were no long term side effects. I guess I was stupid for believing him. Why are you on this site anyway? Go enjoy your life with your clear skin. This forum was created to help people who have suffered from this drug, which clearly does not include you. Read every post on this site as well as other sites. Do you really think all these people are crazy and just imaging side effects from Accutane? Once again I am happy for you, but how are you benefiting from your post? Are you trying to convince everybody who has suffered from Accutane that they are crazy? I'd really like to know.

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193

I checked my email today and noticed there were 5 replies’ left on this forum which I started last August 2009. I have noticed more and more over the last few months of the negativity being left on here that seems to be dealing with someone(s) ego not wanting to admit because something happened to them with no implications, that it surly couldn’t happen to someone else.

For one example, someone left a post that they took Accutane in the early 80’s and their doctor was extremely knowledgeable on the side effects of this drug and they informed the patient of all possibilities good and bad what may happen. First of all, when these drugs were placed on the market(1982-1984) for acne and already a chemo therapy drug for cancer, there was not a doctor on the face of the earth that knew what, if any long term side effects these drugs may cause, of course, unless they were a time traveler. There is no doubt that some people that have taken these drugs for cystic acne have received absolutely no known side effects and these drugs have been a blessing for them. We love to hear your positive stories. BUT, it’s also been proven that not all people that have been prescribed these drugs have been so fortunate. Is it the dose, the length of time one is prescribed it, the physical activity one does while taking it. Maybe it just effects different peoples body and chemistry in different ways. These questions need to be answered for we have a better understanding of why some people have no side effects and other aren’t so lucky.

We the people must demand with these drugs and all drugs that many independent test need to be run on them over a period of on going years to make sure the positives out way the negatives.

A upcoming physician only will learn what is in the American Medical Journal about medications, and UNFORTUNATELY, we are still nave to let the pharmaceutical company that makes the drugs do there own study’s on a drug and pass that information onto the FDA. And for the FDA, for what seems to be many reasons, not acquire more specific test. Pharmaceutical companies doing their on lab test on animals and or people for short period of time with NO knowledge of long tern effects of drugs, only doing studies on a small group of people then saying 80 % had no side effects when they only studied the drug on less than 100 people for a short period of time.

Simply put, the FDA needs more transparency which they claim they are doing, but where ? The lobbyist in most cases out number our Senators and Congress men two to one. And the corruption going on behind closed doors the lobbyist do to get their ways will be the downfall of America if we the people let it happen. It has already begun.

I remember very well the state of mind I was in the day I wrote a paragraph to start this forum. I felt hopeless; I had no one to talk to about the side effects of these medications. I neede osmone to talk to that possibly had been or was going through a similar situation. I had taken one of my 3 teenage boys to over 8 specialist looking for any doctors profession opinions and knowledge to explain what had happened to my extremely healthy, very athletic son which after being taking to the ER at 15 years old during a High School sporting event t had become extremely ill. Then, to have the ER doctor tell us he was bleeding severely from his bowels, many abnormal blood tests and there was a good chance that this medications had cause his bowels to complete dry out to cause severe bleeding. This was only the start of his mysterious medical condition that is still going on today, 4 years later.

Then to take him to his dermatologist ASAP and under regulations of the law, to report my sons ER visit to the Pharmaceutical Company that manufactured this drug. The Pharmaceutical Company replied to our dermatologist that indeed their medication had caused this problem in writing in a letter wrote back to the dermatologist. I have a copy of this letter

For all you non-believers out there, that was factual events that happened and where not made up by a family member, a possible doctors opinion etc. That is exactly what the makers of this drug wrote in writing to our dermatologist and to my understanding also a report to the FDA over the side effect this drug caused. The letter also stated that the dermatologist follow up with the manufacturer of this drug on his future doctor visits to specialist, to let them know how my son was doing. To my knowledge, this was never done.

As I have stated many times before, the day I opened this forum up, the only wish I had is that I was able to educated just ONE person on the possible long tern side effects from Accutane, Amnesteem and other generic brands.

This forum has become for the most part a place where many share their own personal story’s with the same goal in mind I had. To help others make the right decision on whether these drugs are the right choice for others to take. And also to educate others from our own personally experiences.

I thank all of you who have shared your comments on here.

When I take time to surf the internet, like YouTube for example, I can go listen to a song that comes to me from years gone by , but then to check out other peoples comments while listening to a song sometimes disappoints me on how someone’s different opinion turns into many postings of nothing but negative comments with someone trying to aggravate the next person even more.

I can only ask that all future comments are left with the understanding that this forum was created for support and understanding of a drug and its generic’s that have caused grief and many unwanted and unknown health problems for others.

Best wishes to all
From the heart,
Scott P.

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195

Scott: Obviously you were referring to my comment about my physician being very knowledgeable AT THAT TIME. I am afraid that I do not understand where you are sensing any negativity on this site.

It is important to realize with any new medication, we do not know the long-term effects, if any. The only way to discover these side effects, is to release the medication, with the FDA's approval, in hopes that there will not be these horrific diseases.

If you would have continued reading my post, you would have seen that I clearly explained that PHYSICIANS KNOW VERY LITTLE ABOUT ALL MEDICATION. I did not infer that anybody on this site is at fault, just because the drug companies do not have that time machine you are writing about.

I felt like it was important to post what I said to educate people that their physicians are not pharmacologists and usually only know what the drug manufacturer tells them. Luckily, there are some health care professionals that study the medication on their own time, prior to prescribing it to their patients.

I am very sorry if you took my posting as negative, but it was meant to be informative and educational. Yes, I am very lucky that I do not have long-term side effects from Accurtane, but that does not preclude me from taking any medication in the future that might have these same effects.

I also said that if I knew then (early 80's) of the RISKS, I still would have taken Accutane, because I would have never survived my life. I really do not think that is negative, pointing fingers, or blaming the victim. It would be my own, educated choice.

Do me a favor and read the entire post, so you see the part where I mention how little any physician understands about any new medication and they do not have any time machines.

I am currently doing a study on the medication LYRICA®, by Pfizer®. If you do a very quick Google search, you will see that even though this medication has not been out very long, people are experiencing the same, horrible side effects from this medication, that is continually advertised on television. Lyrica is simply one of a thousand examples of medication that the FDA approved and did not know the long-term effects until people began complaining.

I will apologize to everyone on this site if my posting came across negatively, however, looking at it objectively, there is not anything I said that could have been taken as inappropriate.

I do hide my credentials when I post in an open forum, as I do not want people to think what I say is the absolute truth, however, I deal with this every single day of my life. I know what drug representatives do and I also know what physicians do (or don't do) to educate themselves on any medication. Hopefully, my point of view can help another person to make a more informed decision and weigh the risks next time their Doctor wants them to begin a new medication.

Thank you Scott.

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197

Ronny: I did open my big mouth about certain credentials I have and I cannot tell you anything professionally. I can say that most physicians do not know squat about vitamins and supplements. Honestly, I took one course in health/nutrition throughout all of my education. Reports do say that Vitamin A can be very toxic (as you can see with Accutane). Do you remember a medication called Retin-A? I vaguely remember that Prior to Accutane, many people would go to Mexico to purchase Retin-A as a cream for their face. The main ingredient was a tremendous dosage of vitamin A (hence the name Retin-A). Vitamin A is a very powerful ingredient. It is just like the vitamin D buzz going on right now. A couple of years ago, physicians didn't ever consider a Vitamin D deficiency a problem. Now you can find a large number of articles about physicians treating their patients for Vitamin D deficiency. Again, Health Care Providers are really not trained in homeopathic, or vitamins that are so very important to the human body. As with anything, when your body is exposed to TOO MUCH of anything, it will react negatively. Since Vitamins are not prescriptions, they are not held to the same standard of testing as controlled medication. They used to sell Ephedrine as a supplement, yet it was really just an upper. People had heart attacks, died and other terrible problems with this unregulated product. Personally, I would only take any kind of supplements in moderation. With Retin-A and Accutane, they boosted the amount of vitamin A to a potentially toxic level. That is why I had to go to my physician twice a month for blood tests. Vitamin A, in very large doses can be harmful to the body. I know that really doesn't address your specific question, but I hope you understand what I am saying about TOO MUCH of anything can be toxic.

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198

I used Accutane at the recommendation of a colleague who used it. A year or two later he was bald, and no more than a year or two after that I was going bald. I also have IBS like some others in this and it has been more detrimental than going bald. I am frequently fatigued and now I am getting some skin growths and skin tags. I am not sure if this is all related, but I am 30 years old and the past 10 years of my life have been regret in taking the drug. My gut feeling is I would be happier, better looking and more successful if I didn't have all these problems which may be side effects of using it.

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199

Well i, like douglas, am greatfull for the drug but unlike douglas my doctor didn't know much and that is how the trade works a pharm rep comes in with the next big thing and gives samples and has the doctor prescribe the med, as for me i have a lot of ailments but don't know if it was caused from the accutane or not..ie achy joints, developed an arhythmia (no history in family of that), no ibs or any other bowel trouble and i was on for 6 months (wasn't covered by benefits) i later had other friends on it but they were on a lot less time and half the dose..i was on the strongest dose (long time ago but 60mg bid comes to mind) and yes i did get the split lips and the sunburns etc..because of all that and my career in nurseing i NEVER take a drug that hasn't been out for a few years and it must have a long term study..look what happened with celebrex, prozac and lithium, prepulcid etc..but if anyone has a site i can check out to see all the possible side effects i would love to see it..thnk and good luck to all..myles

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200

FDA Warns Drugmaker for Not Reporting Drug Side Effects

(Reuters) UPDATED 2010-06-10

Officials with the U.S. Food and Drug Administration (FDA) have warned drugmaker Pfizer for failing to promptly report unexpected and sometimes serious side effects of medications already on the market. The FDA's 12-page warning letter cited reporting issues related to such medications as the cholesterol drug Lipitor, the seizure and pain medication Lyrica, and the erectile dysfunction medicine Viagra. FDA officials say the problems with reporting side effects dates back to 2004, but it has become more common in recent years.

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201

NurseMyles-

Scott has posted on one of the pages the side effects that are listed as of today due to Accutane, also I believe I or Scott have posted the offical link to Roche's info regarding Accutane and thier side effects. As of today almost 300 exisit.
Yes, joint pain (numerous forms of arthritis and bone problems also), ibs and arthymia are listed.

Hope everyone is doing well

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203

Dear Ncc,

Thank you for sharing this information. To answer earlier questions about posts appearing on the site - we have a system in place which relies on certain triggers to make a post 'Pending' - When such an event occurs we are notified to review it, and typically within 1-2 business days are able to decide whether or not it will be approved. It does not matter what the length of the post is, rather the specific content. Hope this helps!

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204

As a follow up to what I was speaking about earlier, with regards to what Health Care Professionals know about Vitamins and the proper usage, I just received this from the FDA today. I hope it is informational to those who might be taking Vitamin D in large doses. It isn't exactly like Accutane and vitamin A, but it is important:

FDA MedWatch Alert
Vitamin D Supplement Products: Medication Use Error
June 15, 2010
Audience: Pediatrics, Family Practice, Consumer.

ISSUE: Some liquid Vitamin D supplement products are sold with droppers that could allow parents to accidentally give harmful amounts of Vitamin D to their infant. Excessive amounts of Vitamin D can be harmful to infants, and may be characterized by nausea and vomiting, loss of appetite, excessive thirst, frequent urination, constipation, abdominal pain, muscle weakness, muscle and joint aches, confusion, and fatigue, as well as more serious consequences like kidney damage.
Read more...
See also: FDA Consumer Update

If any of you have children taking Vitamin D, this is something you should be aware of.

Thanks and good health!

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