Accutane Long Term Side Effects (Page 13)

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 After I have researched this drug extensively, I can't believe that the FDA allows this drug originally made for cancer patients to be marketed for teenagers with acne.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 took Roaccutane 11 years ago because I had bad acne. It wasn't severe and didn't cause scarring but was persistant. I took a moderate dose (1 or 2 a day) on and off for many years. It cleared up my skin completely and it was the happiest time in my life when I was taking them but I couldnt take them without a break and once I stopped the acne came back and I got depressed. Acne caused me to be depressed and not Roaccutane. I get angry when people say to ban it because it has helped many, many people. My life in my teens and twenties would have been a complete misery without it. There would have been no hope. Looks are so important at that age. It's always the terrible and usually rare side effects that are always heard about and not the good stories. It's too easy to blame every health problem on Roacctane. I'm sure most health complaints would have happened anyway. All drugs have side effects. Dont ruin it for everybody.

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Steven S.,

Thanks for your post. Not sure why you may feel a bit lethargic after taking Accutane. Probably just a natural reaction from lack of sleep, not eating right or possibly just staying up at night leaving post on sites with ABSOLUTLEY NO EMPATHY for others. Hope you feeling lethargic have nothing to do with Accutane. Now, why would it?

To 9Cat,

Thanks for your post! I am happy for you that Accutane had helped you with your cystic acne .Ultimately, everyone on this site were looking for the same results in the beginning. As we all know on this site cystic acne can effect our daily activities, like having are pictures taking in a yearbook, going out in public etc. I am glad that any depression you may have had came from acne, not side effects from the drug you took to prevent and stop anymore cystic acne. As discussed many times on these post, not all people are effected in the same way, and some are not effected at all. I am always puzzled why some people with no side effects at all spend there time leaving remarks here that hopefully have nothing to do with you. Youtube is a great place to leave a negative comment over a artist or the song they write. Most of these remarks left there are also another way people cuss and argue absolutely for no reason at all.

Best Wishes to both of you,

Scott

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Scott, you handle yourself very well. I would have a hard time being so nice to a few that seem to think we are all making this up. Thanks very much to you for your story and for the story of others on here. They have meant a lot to me.

I need some help as I may be at a dead end knowing how to get my medical records from the early 90's. I am 99% sure I took accutane , and had no idea until very recently that there were so many side effects. I like many of you saw the commercial on T.V. I had many complications including one of the worst cases possible of Ulcerative Colitis you can get. The med's didn't work and I ultimatley had to have my large intestine removed. I still today many complications due to the UC, even though I had corrective surgery. I also had a very bad time with depression and lack of energy, dehydration etc. I don't want to get into all the details as they are many. Anybody have any ideas as to how I can get information back then as hard proof of the med's I ingested??? The doctor that I saw no longer has them. I have requests with both of the pharmacies we used back then but, both told me it was a long time ago and they will try. No guarantees though. I have a request in with the insurance company we're sure I was with but, who knows where that will lead. THANKS FOR ANY IDEAS, even the most stupid sounding may help. Again, I am very happy this message board is here.

For all you haters, the side effects are very real, and this drug destroyed my life, even today I struggle with the complications. Yes, you may have a great experience , and I hope you do. Like Russian roulette, Only one out of six end up dead. I would still very much tell anybody I know not to try that game.

Anthony

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Now, I understand that side effects suck, but I have taken Accutane for two 3 months trials when i was 18, I am currently a 33 year old chiropractor and have no problems whatsoever from taking the drug.

What completely drives me nuts, is that the predictable long term side effects WERE warned about in the beginning. I had to sign an entire folder's worth of information before I was even permitted to take the it. I had to get regular blood work.
There is a listing of side effects from the pharmacy when you go to pick the drug up!
I'm sorry, but when you took the drug, you knew almost all of the risks.
The other undisclosed risks... yeah, that's an absolute problem, but if you think any medication on the face of the planet is side effect free, you are out of your mind.
I and my parents did extensive research on the medication before I ever started taking it and accepted the risks.
If you didn't, then SHAME ON YOU. People need to start having some personal responsibility and stop blaming others for their own decisions. There is always a chance that the warned about side effects could happen to you.
Just remember, nobody forced you to take it!

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Ex Accutane User:

I know you are not talking to me?????? I don't remember reading in the booklet about how the company knows about the connection to Ulcerative Colitis and I may get it. Maybe you had a special copy????? Not to mention I took it earlier than you before we were taught all of that.

Good for you for your experience, I am very happy you didn't get sick. I can assure you, that had you got sick like I did and then found out that the company knew it could cause this and tried to cover it up????? well you would have the opposite view that you do now. Shame on you for coming on here and saying I was responsible for reading up on all the things the company was hiding from its customers. You are Naive, and have no idea how those of us feel that have gone through the most dire of circumstances due to this toxic drug. You could never understand our point of view here because you were one of the very lucky ones. How about you take less time bashing those of us like myself that spent the good part of a year in and out of the hospital, mostly in. I also went through many surgeries, some emergency surgeries because I was close to bleeding out. You have no right to come on here and call me nuts. It has been proven in a court of law that this drug is truly connected to people getting UC. It has also been proven that the company hid that fact. Now go back to your crib you child, and hopefully you can come out when you have the ability to understand that this drug causes misery for some and miracles for others. THE PROBLEM IS, NOBODY KNOWS WHICH ONE THEY ARE.

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That saved differen't than I had it. I put ex accutane user says at the beginning, then had multiple lines between that and my comments. For anyone confused, His name was at the top so that he would know I was replying to him and then the rest of it is my comment. I know it sounds rude, but at this point some of you have no compassion and are far ruder than anybody defending the fact that this drug made them very sick. Go away, or have the ability to put yourself in somebody elses shoes. Your experience is your own and that is all. If you got as sick as me, and still have blood transfussions 20 years later due to this, you would not have the same opinion.

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Anthony Seeking Help:
You are proving my point in that people just DON'T READ. Why don't you read my original post again, where I said that the undisclosed risks are a problem.

My point is that the disclosed risks, which people accepted when they popped that pill, aren't something to bitch about taking the drug off the market for.

I am VERY cautious when I take meds. Every single medication out there, even over the counter ones has a side effect. If people don't realize that, they're idiots. Most of society today thinks that it's alright to pop pills as a silver bullet like they're candy.

Sure, let's take antibiotics improperly that will create superbugs, sure, let's take birth control pills while I smoke because blood clots could never happen to me, sure, let's pop ibuprofen because a 1/25000 risk of getting gastric ulcers could never happen to me.

THAT is the personal accountability that I am referring to, and if you took the time to actually READ my first post, rather than starting a rant assuming everything is about you.

As a parting thought, I hope you've fully checked out the side effects of the medications you are taking now, so you're not surprised if something else happens.

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ex accutane user,

go away. we are happy that you took the drug and are fine. Obviously others, like myself, weren't so lucky. Not everybody was warned about the horrible side effects of this drug. I took the drug when there were no pamphlets given out about the drug. I don't even remember signing anything special when I got my prescription. My doctor only told me I would get nose bleeds and dry skin with no possibilities of long term side effects. I guess I was just a stupid 17 year old to be so naive. I guess it was crazy to believe my doctor when he said everything would be alright. Why are you even on this board posting? Get on with your life. I can't believe you would come on here and say, Shame on you, to all these people who have suffered greatly. You are an a--hole. Sorry for concluding my post like that, but I can't stand people like you.

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I'm a gastro mess and I took Accutane in my teen years. I am now 40. Diagnosed with GERD at the age of 23. Have severe acid attacks at night, resulting in near choking events. Also have Irritable bowel syndrome. Have recently been diagnosed with divericulosis and may have a peptic ulcer too. I can't say how upsetting this has been the past 17 years. I take prescription antacids daily but I am a risk for getting cancer from these gastro problems and to think it may be from Accutane. It's scarry and sad. I warn anyone taking this drug. To have GERD at the age of 23 and all the all problems that followed makes me think there is a relation to the drug and my problems.

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Anthony,

I have been away from my computer for a few days, sorry I haven't replied to you questions over where you may find records from any drugs you may have taken. From my personal experience, I believe your doctor must keep you records on file for a specific amount of time. They may not have them in there office, but may have moved them to a storage unit etc until they no longer are required to keep them. Your drug store etc should also be able to go back to look at records as long as they were kept on a computer at one point.I wish I knew how to help you. Sounds like you are on the right track and if nothing else works, you can seek legal advice on what laws may be in your state on keeping such records. Please try to ignore anyone that has negitive responces to this post/forum. Like you mentioned, NOBODY can even begin to understand someone elses situation unless they or their love one may be going through such times. Why do some people get poison ivy when they touch it, or even being downwind from it and others can pick it up or roll in it and have no side effects at all. Everyones chemistry is differnt and certtain chemicals effect everyone in differt ways.

Also remember that drug companies pay people to look for sites like this and will do anything to make forums like this a negitive experience for others. Stay strong and let us know how you make out finding past records. I would bet for some reason or another, there are other people that have been on this site or may look at it in the future that have the same questions you have with your past medical records.Let us know how you make out.

Best Wishes my friend !
Scott P.

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My son was on accutane when he was 14 years old. He took it for 3 months, all his acne went away. Would taking accutane for 3 months cause any long term side effects? During his usage he did great, no side effects and lab work was fine. He is now 19 and still acne free. When he gets angry...he gets VERY angry. Is this a side effect? He was always such a happy child, he had a conscience. Never lied...now its bad. At the end of my rope...help!

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Anthony, It was so long ago I took Accutane. I believe I was 14. I don't know what doc records are available but I have been seeing the same gastroenterlogist for the past 17 years. And have been going the past five years with new complaints and testing. I have also shared my gastro problems with my primary care physician and she founds something in my bloodwork where I have to go back to the gastroenterologist. I am looking into a class action suit to see if my situation has any merit. But honestly, if there is anyone who has extensive long term effects that may be due from this drug, I am the example. I don't believe it's worth the risk to take such a thing if you know now what it can do. I didn't know this when I was 14.

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Sorry, I typed Anthony instead of Scott in my last reply.

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I had horribly severe acne that left me severely scarred. I took accutane as a 15 year old kid. It helped a lot with the cystic/nodular acne. At 29 I still have 'normal' pimples. The cysts are less common now, but I still get them on occation. However, I now have the long term effects that are all too common to Accutane users. Particularly IBS - my IBS is primarily stress induced, but occationally flares up for no reason. I've learned to deal with it, but I will live with abdominal pain, cramping, diarrhea, etc. for the rest of my adult life. My wife is a nurse at a gastroenterologist office. There is not much they can do for me.
If I could go back I would avoid accutane. At 15 I didn't realize or care about long term consequences. And I don't feel I was made aware of them. I don't think my doctor really knew. I think he was pushing something a drug rep gave him. Medical marketing is a mess. I know my parents wouldn't have given it to me had they known the risks, but neither of my parents are college educated and didn't know what questions to ask.
Now I use ProActive for acne treatment. I think it is great. I wish I would have had ProActive as a teen rather than Accutane. The pain is not worth it. I would not recommend Accutane to anyone. Use ProActive, if that doesn't work, find another treatment and do more research than you think is needed.

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Ex Accutane User



I have made a real effort to understand where people are coming from on this board and others. NOBODY EVER EXPECTED TO HAVE LONG TERM EFFECTS FROM THIS DRUG. THE PEOPLE TAKING THIS TOXIC DRUG REALLY THOUGHT THEY WOULD HAVE SOME SAFE RESOLUTION TO THE PROBLEMS THEY ARE DEALING WITH. NOBODY I HAVE TALKED TOO THOUGHT THAT WE WOULD HAVE TOO PROVE THAT WE WERE TAKING THEM. I JUST WANTED TO HAVE SOME SAFE ROUTE TO MY RECORDS OF MEDICATIONS I TOOK. THANKS.

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I kept all the records from when our son in 2001 started Accutane. I have the booklet in front of me given out at the dermatologist's office.
Accutane is a medicine...Accutane is a type of Vitamin A... It only listed 5 side effects, You should be aware that accutane may cause some less common, but more serious side effects. Be alert for any of the following :
*Headaches, Nausea, Vomiting, Blurred Vision
*Changes in Mood
*Severe Stomach Pain, Diarrhea, Rectal Bleeding
*Persistent Feeling of Dryness of the Eyes
*Yellowing of the Skin or Eyes and/or Dark Urine
They do add :
Minimal Bone Changes have been detected-the significance of these changes is not presently known.
If you wear contact lenses, you may find that you are less able to tolerate them.
Be sure to return to the doctor as scheduled.
There was quite a bit emphasizing caution to female patients...more pages concerning that. That was it.
In 2001 we are in the doctor's office deciding. We are aware of the effects presented to us at the time. We didn't have internet established at that time either. it was not as easy as it is now to make informed medical parental decisions. How I wish I had all this information back then! So you trust your doctor / dermatologist-he was highly recommended-he wouldn't suggest some dangerous drug for a teenager, would he ? because he is getting some kind of kick back from the drug company for promoting this miracle acne drug originally (as I find out now) used for chemotherapy. Now that was NEVER stated on any of the RX forms or pamphlets we received by in 2001, 2002 or 2003 when we got the RX filled. My gosh, I would have not given my kid a chemotherapy drug to his precious brain and body. He was healthy. And now I read it again and again, It all started when I was 17...and he tells us he never felt right or the same again. A form of Vitamin A !
Roche made it sound so mild! They didn't even use the word, drug, but medicine.

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I also took Accutane in the late 90's. I now have stomach problems but never would go to have a colonoscopy. Since all of this is coming out, I am now considering it! I also have an under active thyroid and I am insulin resistant. I also recently was diagnosed with eczema. I'm wondering if anyone else has experienced this and if these could be side effects of this medication?

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I was in the ARMY for 5 years and was a Sgt, I struggled with acne and now I have all the symptoms your son has with constant joint and muscle pain and have for years without getting checked out. I've assumed it was the accutane or shots from the ARMY but now I know. If you have any advice for me since you've been going through this with your son please let me know, I'm sleeping with constant joint and back pain. I've also been dealing with depression, anxiety and anger and before the ARMY I was a very happy guy with big dreams. Thank you.

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I took accutane for about 2 or 3 years 25 years ago. One day I was lifting some fairly light weights and my lower back just gave out. Fell to the floor in very severe pain. Keeping in mind I ran and cycled 20 miles a day and in really good shape this was odd. I am in my 40's now and live wiht lower back and some wrist pain. X-rays show that my lower discs are worse than typical of someone my age. I would never recommend accuatane to anyone. With knowledge that I did not know, or my parents at the time I took it, I highly recommend to merely try cutting 100% of Dairy out of your diet and reducing absolutely as much saturated fat and food with Cholestrol above 3% completely out of your diet. Human digestive systems developed, or evolved, based on meat, nuts, berries, roots, veggies, fruits 5 thousand years ago. Digestion of domesticated cows milk is not natural to the human body, or for many of us. Most people I know that have completely cut dairy out of their diet have greatly improved their skin condition and joint condition.

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Hi Steven Torstenson,
First of all, Thank You for serving time in the service to make are lives here a safer place to live ! I am still searching for a doctor with some answers to help with my sons joint pain and IBS. Have you tried seeing a Arthritic and Auto Immune Doctor. They are able to run many blood test from Lyme Disease to Lupus. Also if Accutane was the culprit to any health issues that are now present, they can do full body bone scans, MRI's etc to have a record how your body is now . That way you will have something ti compare it to years from now to see if any changes may have taken place.Although I am not a huge fan of many medications anymore, some drugs can be taken for a short time that help with depression and joint pain. Stay strong friend and let us know if you find a doctor that is helpful. Their is an over the counter drug called baxyl that has help my sn out with his joint pain along with others I know that also take it for joint pain.
Best Wishes and keep your BIG Dreams Alive.. You deserve the best man !
Scott

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