Accutane Long Term Side Effects (Page 88)
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I have a son that took accutane 60 mg a day for six months in a row three years ago. Now after many trips to doctors over strange medical problems, it seems accuatne is the culprit medication that has caused servere joint and muscle pain, severe dry lips, redness in face, eye infections of own immune system attacking itself, systems of osteoarthritis in both shoulders, both wrist and right hand, blood in stool, possible hair loss, abnormal liver function test results in AST and ALT. My son went from being a high school football and track athlete while taking this medication three years ago to someone that is in constant pain just washing a car. After I have researched this drug extensively, I can't believe that the FDA allows this drug originally made for cancer patients to be marketed for teenagers with acne. All one has to do is look online what vitamin A overdose does to someone and then you have the results of what this medication has done to my son. This drug needs to be taken off them market ASAP and the drug companies that make it need to compensate all teenagers that they have possible ruined their future. Shame on them! What is going on here?

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REPORT

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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I have written earlier about what a Godsend Accutane was for me. Without it, my life would have been very different, in a BAD WAY! As I mentioned before, there are always risks to any medication one takes. Prior to taking any medication, the patient (or guardian) needs to really consider the benefits versus the negative effects. Another very important fact to keep in mind; Physicians cannot know everything about every medication on the market. In fact, medical schools really do not teach physicians much about pharmacology while they are in school. With new drugs coming out every single day, we cannot expect our health care providers to be responsible for what a Pharmacist, or Drug Representative knows. We are the only ones in control of our own bodies. I am not minimizing the horrific effects that Accutane has caused on a certain percentage of people, but you will find the same thing with any other medication. When the FDA approves a new drug, they do not have the luxury of time. For instance, there are so many new medications available and being released for the treatment of HIV/AIDS. Those people who have the virus do not have the luxury of time, as they would be dead. The medication that people take who are HIV positive are KNOWN to have very serious side effects, however, they are willing to accept them to stay alive. When do we as a society decide it is safe to approve any medication? Does it depend on the disease, or the information that is provided with the specific medicine? In the early 80's, I was in high school when I decided to take Accutane. Luckily, my physician was extremely knowledgeable and did so much research on Accutane before he would prescribe it. As I sit here, reading all of the long term effects that some people have, I still would have made the same decision to take Accutane. I was so close to committing suicide, just because of my acne! It is quite possible that Accutane saved my life. I was willing to take the risk in order to get the benefit. Now I am a very healthy, happy, educated individual, who has social skills, which would not be true if it hadn't been for me taking Accutane. I do believe that the drug companies should be responsible for the small percentage of people who have suffered tremendously from taking Accutane, however, this is a never-ending cycle among the pharmaceutical companies. We are all test-cases when a new drug is released to the market. I hope the FDA does the best job possible to determine what might happen in the future, but that is impossible. I do not want to sound like I cannot empathize with those people who have and are suffering from long-term side effects from Accutane, or any other drug, but as long as we have new medications, we will also have new problems. I will just end by repeating that a physician has very little knowledge about all of the medication on the market, so it is up to you, your pharmacist and weighing your own personal feelings about the risks prior to taking ANY medication. I do consider myself extremely fortunate that I have not suffered from any kinds of side effects caused by Accutane and only see it as saving my entire life. I do wish everybody well and hope that Roche and other pharmaceutical companies listen to you and take responsibility. God knows, they made enough money on Accutane to assist those in need.

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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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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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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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Umm I think that a lot of people choose to blame the drug itself when these problems were already underlying. Have you ever read the warnings for this drug? I would hope that if anyone was considering taking this drug they would have @least read the side effects and warnings of it and weighed the consequences. I was on accutane for 9months, 40mg. I wouldnt letmy doctor increase the dose.I have no side effects almost 2years later. Acne can really effect peoples lives in negative ways. Theres a small amt of people that the drug can effect like this. I debated going on it for 5 years. Couldnt be happier with my decision

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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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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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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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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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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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My son took Accutane for 7 months 3 years ago. Since that time is constantly complains of being tired, joint and muscle pain, trouble sleeping and most recently, treated for SVTs (rapid heart rate) and is now taking a low dose of blood pressure medicine. Has anyone else had similiar results? Is there anything to help it?

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

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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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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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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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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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Douglas- What type of physican are you??? As my husband is one and he had no clue about accutane except not to get pregnant.

Also to cut down time for you on research you can see a suffer who made a biochem board on retnoids and also NCC posted a link on pg 3 #52, he has also suffered for 10yrs and researched. You can read his theroy. Be nice to find someone who could put this to the test. Read all 64 pgs.

http://www.yousendit.com/transfer.php?action=batch_download&batch_id=RmNCckhVdGpwcFZMWEE9PQ

http://max001.proboards.com/index.cgi

Hope everyone has a nice memorial day weekend
Jen

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