Accutane Long Term Side Effects (Page 63)
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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 After I have researched this drug extensively, I can't believe that the FDA allows this drug originally made for cancer patients to be marketed for teenagers with acne.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

Stefan,

Thank You so much for leaving your experiences with Accutane and your positive remarks for all those who suffer.

I see you have talked to Ncc( Nathan). Nathan has also left very valuable information on here. I am glad to hear you two have talked. Please keep us informed on your Youtube updates and thanks for reflecting such positive attitude and outlook when you are going through challenging times. I started this link hoping only to help on person who felt as alone as I did. Amnesteem which is still available in the U.S.

We must stay strong together to bring even more attention to what the FDA ignores here in the U.S. and how lobbyist run the show in our government to pave the way for drugs like these to be hide under the carpet. I have heard that Accutane and all its generic brands have destroyed more teenagers life's than car accidents. I find this easy to believe.

You, my son and all the others that suffer must continue to find hope in unity and let the truth be told.

Thank You for being a part of this thread. Please stay in touch.
Scott

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Thanks Indigo for posting your story here! Once you get your thyroid fixed and adrenals if you still have sjorgrens like symptoms (not sure last time you saw a eye doc) there are some natural things that help the eyes for some

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Indigorush.. am right in thinking you are in the UK ?
My son is also suffering at the hands of this crap! It would be good to find someone in similar circumstances to be able to talk to. As so many people actually don't bother to do anything about their situation . Thankyou for your post i found it somewhat encouraging.. Thanks Mitch UK

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I wish you good luck in the future years.

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I went on Accutane when I was 15. After a year, my acne came back. I went on Accutane again when I was 17. Now, at the age of 21, my skin is completely clear and I honestly made one of the BEST decisions to use this medication. I am so much more confident and I have had nothing but great results. The only side-effect I experienced while using it was dry skin/lips. This went away about a month after my last dose though. I was informed about all of the risks as well. I think each person has to make their own decision, I'm just saying that my experience with this drug was amazing.

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Hi Guys and Gals.

My name is Stefan.
I'm another young man (21) who is suffering the damage of this drug.
I'm doing my best to get the word out.
If you wish, you can follow my Accutane-related (amongst others) YouTube videos at:

youtube.com/FireYourDoctor

I took this drug when I was 15, and six years on ... well, you know the story right?

I found this forum because I googled 'Sjogrens Syndrome Accutane'. Nathan (NCC) posted that everyone gets this because of accutane. I have dry eyes and dry mouth, and even though I take very good care of my teeth, I seem more prone to cavitites (even though I used to eat what I want, without problems).

Also, just to note, I've written an e-Book called 'Roaccutane: The Truth' which is available for Amazon Kindle. It's basically an outline of my experience, and what I've tried so far.

I'm currently seeing a Nutritionist, and recently found out that I have low thyroid (Hypothyroidism... Maybe even Hoshimoto's, but that's my guesswork) and adrenal fatigue. It's clear I have other issues, i.e. digestive problems, but the thyroid and adrenal one's are shown in tests.

Note here, the adrenal fatigue was shown in a saliva test, which I had to pay a lab for. Doctor's don't consider adrenal fatigue a problem. (Yet another reason why the medical industry is crap).

I feel your pain, and have read a few pages of this forum. I fear for the future. I don't want to wind up having my colon removed. The worst thing is being helpless in stopping it. However, I think logic has to come into it. We just need to keep going, with a positive attitude, and we must surely find the answers we seek.

This year, I will be working to fix my adrenals and thyroid through supplements and diet changes. I strongly suspected a thryoid problem 2 years ago, as I had many of the symptoms. However, I was told everything was 'normal'. Recently, I thought 'Wait. When they say "normal", does that mean I could be hanging in at the very end of their given range?'

Yes, it does.
So I got the test done again, and wanted my results.
I was told over the phone that my thyroid was 'borderline'. It was out of range, just about. I'd bet that it was close to being out when I was originally tested.

Like many of you, I won't be taking medicine, so I'll be seeking a natural approach throughout. I love nature. It'd be so simple if everyone knew how valuable nature is. A book called 'Earthing' has proven that the earth itself has healing energy. We shouldn't be wearing shoes. We shouldn't be sitting at computers. We shouldn't be eating processed 'food'.

If I can be grateful to Accutane(/Roaccutane) at all, it is for creating the opportunity to learn about health. I, no doubt, would be a regular teenager if I hadn't of taken Accutane, or got Acne in the first place. I'd be drinking, eating fast food etc. I would be ignorant. I would have ended up taking some kind of medicine because 'that's what you're supposed to do' in our countries.

Personally, I believe we should treat our condition like Cancer. We should support our bodies in every way possible. This means eating clean, actual food. I already drink a lot of water (mainly because of the dry mouth) and drink herbal teas. If you're on caffiene, or soda etc, I'd advise quitting. It won't help you. Exercise is very important. I understand some of you will be less able that me, but a nice walk each day is good. It's good for your mind as well as the body.

I, yesterday, bought a book called 'The EFT Manual'. I'm open minded to new things, but it helps that this has supporting research to show it works. EFT, if you don't know, stands for Emotional Freedom Techniques. It's like Acupuncture, but you tap instead of using needles. It involves a process, which I have not yet learned.

There is a strong correlation between disease and mind (i.e. negative thoughts and stress). Of course, it was Accutane that got us to where we now find ourselves, but we will make it harder for our bodies to heal if we are in a stressed state.

Be kind to yourself. Never blame yourself. If you're here on behalf of a loved one, I applaud you. You're a good person, so don't think otherwise. But do take 100% responsibility for your life. If you are eating poorly, that IS your fault. If you are depressed, you are playing a part in that. Get strong, because you need to be right now.

Hope is a powerful thing. Read something inspirational, i.e. Chicken Soup for the Soul. Miracles do happen. We CAN get better.

It seems to be a factor 100% of the time in Accutane sufferers: Digestion.

I've recently purchased a product called VSL#3. This is probiotics, and contains 450 billion bacteria per sachet. I will be taking 2 a day for a month. It was expensive, but I hope it helps. Follow me on YouTube for futher updates.

I know this is getting long, but I'll carry on.
I asked to have a test for Sjogren's syndrome, probably 2 years ago. My Doctor always made out this was in my head, and offered anti-depressants whenever I came to him about the different side effects. I never took them, because... well, I'm not a moron.

He, recultantly, said he'd do the test though. In the UK, it's one that costs them more money I believe. But, hey, they owe me..

I heard back after my blood test, and was told it was normal. I can't help but not trust doctor's and the medical industry. I'm not 100% sure that the test was done. Call me paranoid, but it just seems that it was a good fit. The symptoms seem to match.

I was, until I gave up because it was useless, going to an eye doctor at the Hospital for my dry eyes (which I have had ever since taking the drug). They do a test, which isn't pleasant, to check tear production. Although my eyes are dry (especially when I wake up), the filter caused my eyes to produce tears. Therefore, maybe I don't have Sjogren's. If the filter (which is what they put in your eye) didn't fill, it would be a likely indicator. The eye doctor actually told me I had blepharitis.

After a while, I came to realise I was just chasing symptoms of a bigger problem. As we don't yet understand why Accutane does what it does (unless you want to believe the whole telomere thing), we don't know the big picture.

The body and mind have a connection, no doubt. Therefore, we need to treat both. If our body isn't well, our mind is unlikely to be either. I'm not pushing EFT, because I haven't even tried it myself, but it looks to be something that works, even when everything else fails.

Emotions create bodily reactions. Stress will create a fight-or-flight response. This is why stress is related to digestive issues. If you are stressed a lot, you're body will go into F-O-F, and most of your body processes are turned off at this point. You just need to be able to fight or leg it. Everything else is forgotten. Again, exercise can be helpful, because it does the 'flight' and stops the response. It calms your body down and tells it to relax once you've stopped running.

I'm covering a lot of ground here, but EFT is known to fix physical problems. Once you fix the cause of problems (stress) you get rid of them. Another book, you may have heard of, is The Healing Code. For one week, while I was doing the code, my digestive system worked. It was actually 5 days. I've had constipation (and other issues) for a year and a half, or more. Just one day, a few years after stopping the drug, I noticed it.
At the time, I thought it might be something else. I'd started to taking probiotics (but only standard 2 billion) once a day, and let myself go and ate s***ty food. But, I still take the probiotics, and over Christmas I've eaten 'regular' (by this day's standards) food. I started having difficulties after those 5 days. I think when you do something like EFT and The Healing Code, you'll doubt them even if you start to get better. They're not a regular way of looking at health, but the information behind them explains why they'd work.

I'll stop this incredibly long message now. I just wanted to offer hope, and you have a few things to look into now.

Here's a video on EFT:

youtube.com/watch?v=TkT0imq2Xkk

Stay strong,

Stefan

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Thank You to all of you who have signed the petition. I know there is over 15,000 damaged...send to anyone you know It's time for answers and a change. We should do a Occupy Roche!

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Contact the link below:
accutane.poweradvocates.com/index.html

The more people that address their issues with this lawyer group, the better chance we have of getting the ball rolling to stop the injustices being caused by Accutane!

I also signed the petition on this discussion Blog. Make it count, continue moving forward to a resolution so no one else unknowingly endures the hardships hidden by this dangerous drug!

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Dear Grieving Mom, I undestand your loss. I know it all too well. I know the guilt and regret and I so regret my son ever being on this drug. I am so sorry for your loss.
We were not told the truth in the first place. I have written all the letters I can. I wrote my letter(s) to ABC News. I got no response. These people are need to be held responsible. This is not right.

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Dear Emmamad,

Thanks for sharing your storys of Accutane on this post. Unless the FDA has changed things, a patient who takes Accutane has to be at least 14 years old with other restrictions. I am pleased to hear you have made the right choice not to place your daughter on these medications ( Amnesteem is a generic brand of Accutane and still available in the U. S.). Did your Holistic Dr. give you any advise on diets to help minimize acne? If so, we would love to hear about them.

I hope all is OK with your stomach issues. Make an appointment to see if your a canidate for an colonoscopy. Hopefully everything will be Ok and you can have a peace of mind about you health too.
You may want to check out the Gerson Insitute for diets that help control acne plus help clean out the digestive tract. My son with long term effects from Amnesteem has a younger brother that is now 18 and battled with acne mostly cystic acne on his back. Now that he has went through puberty , his acne is completely gone. If I would have only known this before I was convinced by a PCP and Dermatoligist Amnesteem was the only answer for my son that took it when he was 14-15 years old. He is now 21 and the concerns about his health never go away.

Wishing you and your daughter the best,
Scott

Wishing You and your daughter the best.

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I am a 30 year old female who has taken this drug twice in my lifetime. Of course, only after every topical and antibiotic was tried. I am now seeking treatment for my 13 year old who started her relationship with acne at age 8. We are on the last topical on the market and have only seen lessoning of redness. I contacted a holistic Dr for advice and he advised NEVER to consider Accutane due to patients of his having chronic issues 20 years after taking the drug...So is started researching and it led me here. I cannot say how thankful I am for SOMEONE telling me 'NO'!! I am also, however, scared for my life. (a little dramatic, i know!) I have no symptoms or complications but have a sick feeling in my stomach that the worst is yet to come!! Thanks to all for your candidness regarding your own stories! I will not allow my teenager to be harmed!!

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shenoo.. please listen to people that have had similar problems as yourself and stop taking this poision. My now 17 yr old took this for only 8 weeks last Nov and was training to be a Powerlifter and had to drop out of college and is still having problems a year after stopping taking this Crap.. I mentioned to his Derm 2 wks ago it says you should'nt do excessiv excercise but he just said he's given it to many athletes. I told him cyclists etc is not the same as lifting weights. I feel my son should Never have been given this , or at least he shoud not have trained at the time he was taking it. My boy even told him (derm) he didnt like taking pills but he still gave them to him.

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Hello sheenoo. Please try to consider stopping accutane as soon as possible. There is definitely something in this drug that destroys the body. You are too young to be taking this chemotherapy drug. Please understand that taking this drug will not help you in the long run. Try to focus on getting this drug out of your system. I don't really know if its even possible since my brother suffered side effects 7 years after taking this poison. Please don't even take another pill of this drug for your future's sake. Goodluck.

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Hey, I've been having accutane since june & it is december now. I am 14 years old. I have been suffering severe back pain, which has been connecting to my legs with shooting pains & then doing the same to my neck. It is now mainly connect to the right side of my body, back, neck should blade, leg all on the right. I have had a couple of scans for the bones but they have no found anything. Do you think this is from the accutane? Please let me know asap, I'm a rower & was training for the Nationals, but my dream has been ruined as I can't train due to this problem :/ have not been training since August. Thanks! x

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My 21 year old daughter took forms of Acutane for 6 months at age 15 and then for 5 months at age 16. She is now 15 weeks pregnant and all seems to be fine at this point, however I am terrified as to what we could be facing. At the time our Dermatologist highly recommended the treatment and stated if it was her daughter she would not hesitate using it for severe acne. I feel now enough time and study had not been made. Any pregnancy problems associated with this after being off the drug for 5 years?

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Dear Mary Jo,

In regards to my sons situations with taking a generic form of Accutane ( Amnesteem), its been 7 years now and he is still dealing with health conditions that are linked to these drugs. Everyone is different. If this is your first time reading this post, you will find many story's of how these drugs have effected many others on this site. Please don't read into each reply thinking the same has or will happen to your situation. I would suggest taking time to read with a open mind and don't jump to conclusions. Some effects seem to be temporary and others not so. Thanks for reading this thread and please stay in touch and let us know how you are doing.
Together we are strong.

Scott

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worried mom in Colorado. How long after your son went off accutane did this go away or did it?

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Just a reminder to all suffers!
change.org/petitions/tell-roche-pharmaceuticals-give-us-the-truth-about-accutane

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I have been on Accutane 4 times for chronic, persistent acne. The first time I took Accutane, I was 28 years old and had tried almost everything else imaginable including almost every antibiotic, proactive, seeing a plastic surgeon, microdermabrasion, etc. Nothing but Accutane produced the results. However, the acne always seemed to return anyway after a couple of years after stopping it. The second time I took Accutane, I had to stop after 1 month of use because of emotional instability. I again tried everything else available, but I decided on a 3rd course of Accutane in 2006 when I was 37 years old because my skin kept breaking out to the point where I was embarassed to go to work. I did have problems at work when I was on Accutane because it was harder for me to remain in control of my emotions. The Accutane worked again, for awhile, but the acne returned again after 1 year after my final dose. Then I took Accutane again, for the 4th time, at the age of 40. I thought I was aware of the side effects. I made sure I was on an antidepressant before starting Accutane. However I am very alarmed to learn some of my other problems may be related to my Accutane use. I do have chronic fatigue syndrome, depression, shoulder pain, etc. A long time ago I was diagnosed as having IBS, but I thought I finally got past that problem. I've always had a lot of health problems so I'm not completely convinced all of my problems are caused by Accutane. I just think don't take Accutane unless you have severe, persistent acne, you have tried every other option available, and nothing else works for you. It definitely should be considered the "drug or last resort", but don't take it away from people who really need it. Maybe require patients to be 21 years old to qualify to take the medicine.

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I am Grieving Mom, Post 663
Hello to "Bro needs help" - I'm sorry I'm not going to be of much help with the names of the medications that my son was given. He had a nurse come to his apartment every two weeks to give him an injection of Risperdal for his mental condition. Also, he was supposed to be on Abilify. Sometimes he took it, more often he chose not to take it. I would say that the injections helped some, but his brain was shutting down more and more as time moved on, We were told that he was doing very well according to most other people in his situation (schizoaffective disorder), but I think he was just able to hide it from everyone when he was with family or medical personnel. I also think it was getting harder and harder for him to put on 'an act.' He knew what his mind was like five years ago, and he realized where it was going.
I have come to the conclusion that this 'mind cancer' was because of the Accutane, and it continued to eat away until there was very little of our son's mind left. He did not want to live in a 'home for the mentally disabled' so his options were very slim.
I am in the process of trying to round up his medical records. I know he was on Accutane the first time, but I'm not sure what the generic names were of the Accutane drugs he was on when he took it the second and third time. Had we known the extent of the 'rare side effects' we never would have let him take the drug. Recently when I read about the side effects of vitamin A overdose, I thought - Why didn't the doctors figure this out? And - could they have helped him had they realized what his REAL problem was?
I don't know what I will do with his medical information when I put it all together or if I will even be able to obtain the information because of the 'medical privacy laws.' I just know that Accutane and all of its generics should be taken off of the market as soon as possible. It continues to hurt the many, many people who are on it and who will be put on it in the future. People go on it because of an acne problem and little do they know what horrible medical problems could be lurking in their future. I am devastated and others are and will be too.
Last Sunday I was listening to the radio and a mom called into a talk show and said her daughter was on Accutane, an ADHD medicine, and an anti-depressant. The mom didn't know why her daughter was having so many medical issues. --- Why oh why is this drug still on the market???
I have read about the Congress man from MI that lost a son due to Accutane. If he couldn't get anything accomplished with the drug manufacturer, Roche, I probably won't get much accomplished either, but I will try... Grieving Mom

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