Accutane Long Term Side Effects (Page 22)

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 After I have researched this drug extensively, I can't believe that the FDA allows this drug originally made for cancer patients to be marketed for teenagers with acne.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

Hey, guess what---they don't always tell you. Maybe they say more now but back in 1983 all I heard was don't get pregnant(bone issues) and blood tests every 4 weeks. Now I am dealing with joint pain and arthritis, psoriasis, stomach issues, food intolerances and extreme sunlight sensitivity. I CAN NOT be in the sun. I swell, get sick and become extremely lethargic. I have long suspected that Accutane could have started this ball rolling. They still don't know what is wrong and for a year and a half, I was treated for Porphyria (EPP)- a rare genetic disorder. I found out I don't have Porphyria but they don't know what it is.
To the person who posted concerning parents checking things out.... you should pause before you make a blanket statement to the general population concerning parenting skills and Accutane.
Yes, it's always a good idea to research but remember, not every doctor says the same thing. Apparently sometimes it takes years for "The Big Reveal" .When I started the med, it was new. I believe I have learned a harsh lesson. Maybe the Accutane has been the problem all along.
My heart goes out to all who have had issues with this med. What is to be done now?

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Tami,
Thank You for your post! Its people like you that share there own personal story’s help others to make the right decision if Accutane is for them or not. Anyone paying attention can easily notice that all most daily, the FDA is recalling or placing new warning labels their multi-million dollar drugs that have been on the market for years. Accutane is no different, except for the blind eye on how the FDA turns a blind eye to the thousands of complaints. I wrote the FDA over a year ago on my sons complaints of apparent long term heath issues had and continues to have. I never heard back from them, so I called and asked, "Have you received my written complaint sent to your website?" Their reply was "we will call you within a week with a follow up." It’s been over 100 weeks and still no reply from the FDA. Again, the problem is that the fat cats and good old boys in Congress and the Senate get their pockets lined with millions of dollars in cash to fund their re-election.

I am personally asking for everyone that reads this to contact a national news TV station and tell your personal story to them. I have already sent my son’s story to ABCnews.com. Maybe if we all bombard this one site with are stories we have posted here, we may stand a better chance of being heard as a group. Please take a few minutes and email your story to them.

Together, we can make a difference!

From the Heart,
Scott

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Tami- Have they tested you for lupus or Celiac? Though many accutane suffers have the same symptoms and lab work comes back normal, few get back abnormal results.

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If there is an ALTERNATIVE could someone PLEASE tell me what that is? Antiobiotic, steriods, tried them all!

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@Robin...I break out from allergies to glutens in food you hear the norm wheat, rye and barley, but it's much more then that like corn and rice too. So when I break out it's because I am having a allergic reaction to something I ate or drank or even put on my skin or was around.

My dog is on clay she is fighting bone cancer. Clay goes back hundreds of years known for detox properties, making clear skin...etc. Research it if your interested make sure you know the company you buy it from.

Other ones but again do your research in it is, coconut, zinc, raw honey, etc...

Best of luck

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Wow, after finding this site today I really wish it was around 12 years ago. I took Accutane in 1997 when I was 18 for about 8 months and had all of the side effects like dry/sensitive skin, chapped lips, ect. In 2007 I took another round for almost a year. In 2008 I was diagnosed with Osteoarthritis in my lower back (I was only 29). I never thought that it could be linked to the Accutane until now. Along with the Osteoarthritis I have major joint pain to the point where it hurts to sweep the floor. Also, for about 10 years now I have had severe stomach problems that follow the symptoms of IBD and am fatigued 99% of the year. I understand that with all medications there are side effects.....when you read those pamplets they state "may cause....." or "in some cases....." you just don't think it will happen to you that it's a small percentage of users. If I knew how common all these symptoms were I wouldn't have taken the drug. After reading this forum it is clear these are Common Long Term Side Effects and it should be stated as such. I am completely shocked that these problems I am having are most likely associated with the Accutane.

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I am 24-years-old and I took Accutane after I finished high school. I was about 19-years-old. I've had acne all my life and it always made me self conscious. I decided to try to get rid of it before entering college. I took it during summer 05' if I can remember and I followed all protocols (aka stay out of sun, healthy mental state of mind, sunscreen when stepping out into sun, moisturize skin daily, drink lots of water for dehydration, check blood work every month, etc).

I took it for about 3-4 months ONLY. My doctor recommended that I only do 3-4 months and if I needed to take more, I had to STOP treatment for 6 MONTHS AND THEN try it again for another 3-4 months (to let my body rest from it). Luckily, my acne went away after the first 3-4 month trial. Now, 6-years later, I haven't had any problems (that I can think of).

I think it is very important that one does their research over it and most importantly, I think every single person's bodies take medication differently. What might be good for one person might not be good for another.

I've seen the new commercials concerning the side effects pertaining to irritable bowel syndrome, crohn's disease, and other abdominal problems. I have a friend who has crohn's (not from taking accutane) and its very difficult.

I apologize and send my sympathy out to those who it didn't work out for or had to suffer from severe side effects. I wouldn't recommend acctuane to everyone. It is very important that you speak to your dermatologist about it and find out what best will work for your individual needs. For me, I had tried EVERY over the counter medication and even prescribed medication, nothing work. So accutane was my last resort.

May god bless you all.
3-14-2011

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I do not believe that is a fair response, many people took these medications before mass internet and research was available. If you had any sense you would know that. You should never assume you know any circumstance or downgrade someone. Lucky for you, you are probably young enough to have the resources readily available, but clearly very immature also.

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Hi everyone! Just wanted to say that even with the inet it isnt possible to do accurate research of this drug. Most people look on various acne websites, maybe videos of people on youtube who've taken it, photos on boards before and after..... people discuss 'is this normal' and everyone agreeing they all have the same AWFUL symptoms during treatment. There may be a few people saying not to take it because of those symptoms. I never found this messageboard until i specifically typed into google 'symptoms after accutane'. It seems that yes, it is still possible to miss ENTIRE chunks of relevent info on this drug even when you think you've researched it. For instance today I was looking up hair loss after accutane and found loads of messageboards similar to this one....which i never found before I took the drug. I'm now four months off and am still getting hair loss (about a thread-worth everyday) and from what i've read this isnt going to improve. I know its quite a small issue, but even now it just hits me at how poisonous this drug can be and I worry about all the things it might be doing that I cant see yet.... although it should have cleared my system after a month (yeah right!). I wish more research was being done on this drug- at least to just find out how it works exactly and perhaps why some people are affected and not others.... and why it affects people in such varied ways, ie, joint problems, bowel problems, conceiving, mental issues, etc. has anyone come across any external research?? melissa x x

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I have finished my 6-month Accutane therapy 3 years ago (I was then 37 yrs old). During the therapy I have experienced vision problems (which were gone after the therapy), awful muscle and joint pains (cramps and stubs-like), which did not go away after the therapy. I was so in pain, that I souhgt physician's help, and after numerous blood work, I was diagnosed with osteoarthritis :((... and my spine joints in the upper back and hand joints are slowly (but surely) fusing together, which will eventualy lead to a disability :(((... I am dissapointed about my diagnosis, and I have no idea if this has been caused by Accutane, since I have back problems since youth days. A year later, i have started having serious issues with my digestion: enormous discomfort in my abdomen and terrible bloating. I could eat a walnut-size of food, and 10 minutes later, I would feel as if I have swallowed an elephant. With that condition started, I rapidly gained 12 pound in about a month or so, and I have always been good to keeping my weight right and eat right. I have not been able to see a specialist fro that issue, and am planning to do so. Again, I don't know if Accutane has caused all of these, but when it comes to the results about my acne problem, I am very satisfied and a much happier person now. Any feedback would be appreciated. Thank you.

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Dear Muhi,

Thanks for your comments. I agree your next step is to follow up with doctors and specialist to have your digestive track chcked out to rule out Irritable Bowel Disease and Irritiable Bowel Syndrome. Also I would suggest getting a more recent update n regards to your osteoarthritis . A full body bone scan help pin-point my sons aches and painsd in both shoulders, both wrist and right hand. As you know, by having test done now, you will be able to compare them to test you may have years from now to diagnose any possible changes. Stay positive and dont be afraid to tell your doctors about any unusual symptoms you may have down the road. Stay in touch !
Best Wishes,
Scott

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Scott, Is there someone you specifically addressed your e-mail to at ABC.com? I want to give my two cents.
Thank God for the internet for new parents and new information on drugs. If only my family was as fortunate.
I hope you and your son are doing well.

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Hi DC Forth Worth,
I went to abcnews.com. You can look for " Brian Ross Investagates" or " Chris Como on the case". I wrote to Chris Como about 2 weeks ago, I haven't heard back for him. Chris Como has been moved to the 10 pm show once a week called 20/20 and Brian Ross investigates just about anything for the ABC World News at 6pm with Diane Sawyer. Hope that helped.

Good Luck and Best Wishes,
Scott

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I took accutane over 20years ago and reading this board helped me to understand my many medical issues. I used to joke that I have the medical chart of a 90 year old. Early similar, scoped both ends in my 30's, diagnosed with fibromyalgia due to joint pain, osteopenic, can't tolerate gluten or dairy, recent swelling in face, hands and feet, issues with blood counts. Thanks for posting.

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Hello DC Forth Worth,
I replied to your email on who to contact at ABC news but for some reason this site decides to review the post before posting it. I will follow up with another reply if I dont see it posted within a day or two.
Scott

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I took Accutane for a couple months ended up with crohn's disease it sucks. While i was taking it I was so depressed and i couldnt understand why i started burning myself on my wrist i still have scars because i felt so unhappy. Now i look back on that i wonder why I did that but that was the time i was taking the Accutane soon as I stopped i snapped out of the depression I can't help but see that it might be related

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Wow, I feel a camaraderie with the rest of the victims here whose lives have been devastated by this drug. I am 42 yrs old, and like many others, took it in the mid-eighties when I was a junior in high school (16 yrs old). Of note, my brother and sister did not have any significant issues from accutane, although my sister did have two miscarriages. Before taking accutane, I was an easy-going, happy and healthy kid who had friends, was athletic and very physically active. Unfortunately I have a hypochondriacal mother who took myself, my brother and sister to the dermatologist periodically because she wanted us to look perfect! None of us had anything worse than mild to moderate acne, mine being mild. So I took it because I was told by the dermatologist and my mother that not only do I need it, but that it would shrink my sebaceous glands and I would never have acne again. The only thing I was told is that my skin would be very dry and that I should avoid prolonged exposure to sunlight. Wow, that sounded too good to be true, and it was! I thought it was amazing at first, as it permanently rid me of my acne. I don't remember having anything but dry, crackly skin while being on it. However, a month or two after finishing taking it, the personal hell began. I started to have dizzy spells/panic attacks several times a day(in school, nonetheless), and I slipped into a depression for which no one could figure out why. I also developed anger issues, probably related to the depression. I thought it was "in my head", and I internalized it. I had suicidal thoughts. My mother took me to a psychiatrist who was completely worthless and just put me on Xanax. The Xanax turned me into a vegetable, and I quit taking it. I ended up attending one semester of college(for which I had a full scholarship), dropped out, and my father convinced me to join the Army or get out of dodge(which was actually good for me, probably because I had no time to think in basic training). My parents threw my issues under the table because they had no idea my onset of problems were related to Accutane, and neither did I! I was able to hold on to a 20-year career in the Army and finish my degree, and am now in graduate school; however, during my military career I had anger issues, self-destructive behavior and made some significant poor personal decisions, not to mention on and off bouts of depression, mostly later in my career. I also have very bad TMD in my left jaw which affects both my vision and my hearing often; not sure if the degradation of my left jaw joint is attributable to accutane or not, but I can't rule it out. I've been receiving accupuncture for about a month now. For some reason, not only is accupuncture effective, but it has "cleared my head" somehow and I am now facing the true cause of many of my past issues instead of repressing them. I do have a question for the rest of you, though - is it warranted for me to be angry at my mother for ever taking me to the dermatologist for mild acne? I just always wonder if she pushed for me to take it when I didn't need to take it, because I wouldn't doubt that. I know that the pharm companies are ultimately at fault, but still. Please, put me in my place if I'm wrong about this; maybe I need to see a therapist about this issue I'm having with her.

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I was the same and then gave up Gluten and Dairy and I am much better now. It is worth a try for you. I never realized it could be related to Accutane until I read this message board. Google gluen free, casein free diet, it's easier than it first seems.

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@Sue...

That is great news! I continue to follow Dr. Peter Osborne in his Glutenfreesociety.org because he has helped me so much with understanding the truth about the gluten problems. There are new studies out there, but I see still the old stuff is still be told to us. That's sad! I could be WRONG with this, so correct me if you know, but is it dairy is bad because of what they are feed meaning soybean and corn etc? Because a lot of gluten free people are eating from Grass-Fed only. I was on thyroid medicine and it was causing stomach aches it was compounded they told me the pigs were fed corn. I stopped taking it, not even sure I needed it the thyroid since my test were normal so hard to say for sure, but as soon as I stopped the stomachaches were gone. :) OK it makes sense we are what we eat and what they eat too.

I think everyone should be on a "TRUE" gluten free diet, it's just healthier I feel.

Best wishes!

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My son also was on Isotretinion for 6 months when he was 15. After being on the med. I noticed he was not growing any taller,hands and feet were not growing either. He just turn 17 and was told his growth platelets were closed. He is 5'6''3/4, his projected height was to be 5'11" to 6'. I know this is what stopped his growth. Is there any class action suits out for this (premature bone platelet closed). I have lost much sleep over this, knowing what a terrible and life changing drug this is. I would have never let my son take this knowing what I know now, Thank you, and I would really appreciate anyones help on this.

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