Accutane Long Term Side Effects (Page 93)
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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 After I have researched this drug extensively, I can't believe that the FDA allows this drug originally made for cancer patients to be marketed for teenagers with acne.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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She said she prescribes this everyday. I don't really have oily skin in fact i have well normal oil like in the crease sides of my nose a little forhead blah blah but not particularly oily skin---actually i would say dry-normal MAYBE slightly oily. but yeah just thought I'd say.

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Okay so I have well I think moderate/moderate-severe acne. I went to the dermatologist last Thursday. She talked little about my other options because she very strongly recommended Accutane. She said it's because I have very inflamed acne which is causing major scarring-which is getting worse. She said she wants to take it more aggressively because I've had it for 2 years and the scarring is so bad. She was telling me about it warned me about the side effects and gave me a info sheet she wrote up and it said that the things like depression, sun sensitivity etc. are all reverse able after I stop the drug for about 6 months or so. She wants to put me on 40 mg's once daily with dinner. I didn't give it the go right away said I need to do some research. I found miracle stories... and now these-I was kind of excited to take it... until I read these-these brought me to tears because why does it have to be so fricking hard to get clear effing skin? I mean there's so much coming up and I'm sick and tired of being SO self concious about my acne. What do you guys think? My dad hasn't done research nor will he he doesn't knwo the possible long term effects. I'm realyl scared someone please help me and reply---as for parents/people who have lost their loved ones-I'm so sorry I know what it's like to lose someone close-not to Accutane but to disease-my mom died of breast cancer-anyways I'm rambling and drifting off topic-sorry this is so extensive I'm just extremely worried.

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Okay so... I'm freaked out to all hell now of the long term, my dermatologist strongly recommended this and now I'm reallllly afraid-I'm 14. Someone PLEASE help!! :O Please reply and let me know.

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Max,
If your doctor has not warned you about the possible long term side effects from this drug, I would make an appointment with him ASAP and discuss your concerns with him in his office. You should have had to sign a I Pledge forms to receive this medication. I would ask your pharmacist to give you a detail copy of the possible side effects from this medication, if you don't already have one. Take all this information with you to your doctors appointment and have him explain them to you. Good Luck !

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I've been on accutane for 22 days and have the basic dry skin and dry lips, I just noticed a rash beginning on my hand, I was already considering stopping but now I am thinking of stopping it completely after reading this. My doctor did not inform me about all these effects. My Question, since I have only been on it for a short period of time and stop taking it completely will I expect to experience any of these effects and how long does it take to clear you system??

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Accutane has destroyed my life. I am 41 and took accutane for 6 months 4 years ago...to make a long story short i literally crawled through my home with pain. i have two young girls and thankfully a great husband. i have had to completely alter my diet to egg wheat and dairy freee to function. my face is still red all the time and i could use eyedrops all day and still have red eyes. my chronic constipatition is unbearable and i still have breakouts...to cap it all off i also used botox which also is another drug that should be pulled from the market..icould have died with the chest pains i have experienced...please never take this drug just drink tons of water and change your diet. i am scared that my life is destroyed forever...my joint pain is constant.

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I posted a week or so ago and now have my tests back.....all okay but I discussed my severe withdrawal symptoms with my Dr and she said they sounded similar to Heroin withdrawal and that I am breaking new ground with this type of withdrawal for an older person. I strongly suggest to anyone, particularly younger people NOTHING is worth living in pain whilst on tablets and even worse coming off it.....6 months of my life in pain.... seems to have fixed my face but my Dr also said Rouaccutane (Aussie name) can stay in your system for years. Not worth it!!!

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Katie- I truly understand same thing happened to me. I not sure what you have been doing for the bone problems, hopefully you have gotten your Vit D, Calcium, Parathyroid and hormones checked. I take a special calcium for the severe osteopenia I was left with...called bone builder along with Vit D. There are support groups out there that have great suggestions for rebuilding the bone, your not to old yet for that. Try and stay away from biophosphates if you can....
Hope this helps

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I took accutane 10 years ago and have problems with chronic bone pain in my hips and neck both of which started shortly after starting accutane therapy. When I started accutane at 16 y.o. I was 5' 7 and I am now 5'5 and have very poor bone density. I have had chronic problems with IBS as well.

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i was prescribed accutane when i was 14. i wish there had been this many resources on the internet then. i did try to research it by myself and found out it had not been tested on children. the drug scared me from the start... the pill package alone, with that silhouette of the pregnant lady and the international symbol for no around her. i told my doctor that it hadn't been tested on kids and he told me i was practically an adult anyway. at 14?!! come on! i had bad acne, but it wasn't cystic acne. anyway, i took it. i always had to have chapstick with me or my lips would crack and bleed. of course i was overly sensitive to the sun. i was on the water polo team at the time and we were at a camp all day, i had slathered spf 55 all over me till i was bone white and STILL came home with sun burn blisters on my forehead. accutane made me severly depressed too. i cut myself daily, attempted suicide 3 times. stopped eating regularly. i went on anti-depressants because i thought i was going crazy. paxil, lexapro, something else. those only made it worse. i failed more than half my classes. i had no idea that it was the accutane at the time, i thought it was me. i barely graduated high school, when i had always been an 'A' student. i was completely gone. i started abusing xanax after high school while i was at college. i dropped in and out of school. i still cut myself then. i had been off accutane for years, but i was still depressed. when i was 20 i read an article about a kid who killed himself on accutane and it clicked. i still resent the f*** outta my doctor for even suggesting it in the first place, but at least i found out the truth eventually. i hit rock bottom and had sort of personal moment. i stopped all pills and started using cannibus to calm the residual anxiety, nausea, appetite problems i still have. last spring i graduated college, high distinction. i have a full-time job and i am happy. and happy to live. oh and guess what? I STILL HAVE ACNE. granted its not bad, but still.

so please please please teenagers... ANYONE... DO NOT TAKE THIS DRUG!!!!! and please don't give it to your children... not everyone can fight their way through. it almost killed me, don't let it kill you.

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Listed below is what the generic version of accutane has done to my son. He was never told it was a chemo drug for brain cancer. At that point I would have questioned the doctor extensively and my son's outcome may have been a lot different it what it is now. He did not have brain cancer, he had cystic acne and the Dermatologist exact words to me were I have treated thousands of patients with accutane for acne. I have read thousands of other cases also on how accutane has help kids out with a bad complexion. All side effects from this drug, if any will go away after his 6th month of treatment.I have only EVER read in one medical book where ONLY ONE CASE of someone who developed ANY long term side effects from this drug. You will start noticing an improvement with your sons acne with in a few months. Are you ready to get started ? I had our PCP doctor tell us It's time your son goes on accutane, here is a referral to see a dermatologist, we don't prescribe in here in our office. They will be able to help your son out.

1) Bone and joint pain
2) Burning, redness, itching and other signs of eye inflammation
3) Scaling, redness, or other bulls*** with his lips

Then listed under RARE ( now rare means one out of thousands may have one of about 50 things listed, right...nope

1) Back Pain
2) Bleeding of the gums
3) Blurred vision or other changes in vision
4) Diarrhea ( severe ) Yesterday and most days with him !
5) Pain or tenderness, or stiffness in muscles ( long term treatment is how that have it listed )
6) Rectal bleeding

Under Incidence not known:

1) Bloating
2) Bone pain, tenderness, or aching
3) Burning or stinging of the skin
4) Constipation ( one or the other most of the time )
5) Dizziness
6) Double vision
7) Irritation
8) Joint pain, redness, stiffness, swelling
9) Loss of appetite
10) Muscle cramps or spasms
11) Muscle spasm or jerking of all extremities
12) Muscle weakness
13) Pain in arms, legs , ribs
14) Pain in chest, groin, or legs, especially in the calves
15) Pains in the stomach, side, abdomen, possibly radiating down the back
16) Redness or soreness around the fingertips
17) Redness or soreness or itching skin
18) Sensitivity of the eyes to sunlight
19) shortness of breath
20) Swelling of the eyelids, lips, face, lower legs or feet
21) Swollen, painful or tender lymph glands in the neck, armpit, or groin
22) burning, crawling, itching, numbness, pricking, pins and needles, or tingling
23) Continuing ringing or buzzing or other unexplained noises in the ears
24) Dandruff
25) Large amount of Triglyceride in the blood
26) Hair loss
27) redness of face
28) Unusual drowsiness, dullness, tiredness, weakness, or feeling of sluggishness
29) Unusually warm skin of the face
30) Sores, ulcers, or white spots on the lips or tongue or outside the mouth
31) Sores on face that take along time to heal
32) And last but not least.... Fast irregular pounding, or racing heartbeat or pulse

Now is the time for us to come together and do what needs to be done to open up the public's eyes on this drug and it's generic brands like Claravis and Amnesteem.Let's find out why the generic versions of accutane are still on the market in United States. And if the makers of Accutane pulled their product from the shelves in 2009, why haven't the generic brands also been pulled as use for treating acne?

I had read somewhere where these drugs are causing more harm in teenagers then car accidents.

We can not afford to be silent any longer.

Supplemental drug details from: http:/­/­chemocare.com/­bio/­isotretinoin.asp

Accutane®

Generic name: Isotretinoin
Other name: 13-cis-Retinoic Acid

Chemocare.com uses generic names in all descriptions of drugs. Accutane is the trade name for Isotretinoin. 13-cis-Retinoic Acid is another name for Isotretinoin. In some cases, health care professionals may use the trade name Accutane or other name 13-cis-Retinoic Acid when referring to the generic drug name Isotretinoin.

Drug type: Accutane is an anti-cancer chemotherapy drug. This medication is classified as a retinoid. (For more detail, see How this drug works section below).

What Accutane is used for:

* Being investigated for use treating various different cancers.
* Treatment of severe acne.

Note: If Accutane has been approved for one use, physicians sometimes elect to use Accutane for other problems if they believe it might be helpful.

How Accutane is given:

* By mouth in the form of a soft gelatin capsule, capsule sizes are 10, 20 and 40mg.
* Protect capsules from light.
* Take capsules with a meal and a full glass of liquid.
* The amount of accutane you will receive depends on many factors, including your height and weight, your general health or other health problems, and the type of cancer you have. Your doctor will determine your dosage and schedule.

Side effects of Accutane:
Important things to remember about the side effects of accutane:

* Most people do not experience all of the side effects listed.
* Side effects are often predictable in terms of their onset and duration.
* Side effects are almost always reversible and will go away after treatment is complete.
* There are many options to help minimize or prevent side effects.
* There is no relationship between the presence or severity of side effects and the effectiveness of the medication.

The following side effects are common (occurring in more than 30%) for patients taking accutane:

* Typical retinoid toxicity: (symptoms that are similar to those found in patients taking high doses of vitamin A): Headache, fever, dry skin, dry mucous membranes (mouth, nose), bone pain, nausea and vomiting, rash, mouth sores, itching, sweating, eyesight changes.

These are less common side effects (occurring in 10-29%) for patients receiving accutane:

* Back pain
* Pain in muscles and joints
* Allergic reaction
* Abdominal pain
* Poor appetite
* Dizziness
* Drowsiness
* Insomnia
* Anxiety
* Numbness and tingling of hands and feet
* Weakness
* Depression
* Hair loss (thinning)
* Dry eyes, sensitivity to light (see eye problems)
* Decreased night vision, which may persist after treatment is stopped
* Swelling of the feet or ankles
* Low blood counts. Your white and red blood cells and platelets may temporarily decrease. This can put you at increased risk for infection, anemia and/or bleeding.
* Abnormal blood tests: increased triglyceride, cholesterol and/or blood sugar levels.
* Increases in blood tests measuring liver function. These return to normal once treatment is discontinued (see liver problems).

Rare but serious possible side effects of accutane:

* Blood clots. Blood clots rarely can lead to pulmonary embolus or stroke - potentially life-threatening conditions.
* Pancreatitis (inflammation of the pancreas) is a rare side effect. Mainly noted in blood tests that return to normal after therapy is discontinued. Rarely may be severe causing symptoms. Symptoms of acute pancreatitis include pain in the upper abdomen that worsens with eating, swollen and tender abdomen, nausea, vomiting, fever, and rapid pulse. If these symptoms occur notify your health care professional immediately.
* A very serious side effect that has been observed in patients that have taken medications similar to accutane for treatment of leukemia, is called APL differentiation syndrome. This syndrome is a reaction between the drug and the leukemia. It is preventable with proper monitoring and immediate treatment. This syndrome produces fever, difficulty breathing, weight gain, lung and heart problems. It is generally treated with high-dose steroids. Be sure to let your health care professional know if you experience fever of 100.5F or 38C, difficulty breathing, or sudden weight gain.

Not all side effects are listed above, some that are rare (occurring in less than 10% of patients) are not listed here. However, you should always inform your health care provider if you experience any unusual symptoms.

When to contact your doctor or health care provider:

Contact your health care provider immediately, day or night, if you should experience any of the following symptoms:

* Shortness of breath, wheezing, difficulty breathing, closing up of the throat, swelling of facial features, hives (possible allergic reaction)
* Fever of 100.5 F (38 C) or higher, chills (possible signs of infection)
* Having thoughts or feeling like you may want to harm yourself or others
* Difficulty breathing, sudden weight gain, swelling, vision changes
* Severe abdominal pain

The following symptoms require medical attention, but are not emergency situations. Contact your health care provider within 24 hours of noticing any of the following:

* Black or tarry stools, or blood in your stools or urine
* Unusual bleeding or bruising
* Abdominal cramping
* Nausea (interferes with ability to eat and unrelieved with prescribed medications)
* Vomiting (more than 4-5 episodes within a 24-hour period)
* Diarrhea (more than 4-6 episodes in a 24-hour period)
* Mouth sores (painful redness, swelling or ulcers)
* Extreme fatigue (inability to perform self-care activities)
* Anxiety, changes in thinking or mood, confusion, difficulty concentrating or trouble sleeping, aggressive or violent behavior, or suicidal thoughts.
* Depressed (interfering with your ability to carry on your regular activities)
* Ringing in the ears, problems with hearing
* Yellowing of the skin or eyes

Always inform your health care provider if you experience any unusual symptoms.

Precautions:

* Before starting accutane treatment, make sure you tell your doctor about any other medications you are taking (including prescription, over-the-counter, vitamins, herbal remedies, etc.).
* Do not take vitamin A supplements. Vitamin A in high doses has many of the same side effects as accutane. Taking both together may increase your chance of getting side effects.
* Do not receive any kind of immunization or vaccination without your doctor's approval while taking accutane.
* Inform your health care professional if you are pregnant or may be pregnant prior to starting this treatment. Pregnancy category X (accutane may cause fetal harm when given to a pregnant woman. This drug must not be given to a pregnant woman or a woman who intends to become pregnant. If a woman becomes pregnant while taking accutane, the medication must be stopped immediately and the woman given appropriate counseling).
* Because of the extremely high risk that a deformed infant can result if pregnancy occurs while taking accutane in any amount even for short periods of time, for both men and women: Do not conceive a child (get pregnant) while taking accutane. Two methods of effective contraception are recommended for women of childbearing potential, unless absolute abstinence is the chosen method. Discuss with your doctor when you may safely become pregnant or conceive a child after therapy.
* Do not breast feed while taking this medication.

Self-care tips:

* Take this medication at about the same time every day along with a meal that includes some fats.
* Avoid grapefruit juice
* Avoid wearing contact lenses if you have dry or irritated eyes
* Drink at least two to three quarts of fluid every 24 hours, unless you are instructed otherwise.
* You may be at risk of infection so try to avoid crowds or people with colds, and report fever or any other signs of infection immediately to your health care provider.
* Wash your hands often.
* To reduce nausea, take anti-nausea medications as prescribed by your doctor, and eat small, frequent meals.
* To help treat/prevent mouth sores, use a soft toothbrush, and rinse three times a day with 1/2 to 1 teaspoon of baking soda and/or 1/2 to 1 teaspoon of salt mixed with 8 ounces of water.
* When you start taking this drug, you may experience headache, loss of night vision, sleepiness or eyesight changes. Use caution when driving or engaging in tasks requiring alertness until response to drug is known.
* Avoid sun exposure. Wear SPF 15 (or higher) sunblock and protective clothing.
* In general, drinking alcoholic beverages should be kept to a minimum or avoided completely. You should discuss this with your doctor.
* Get plenty of rest.
* Maintain good nutrition.
* If you experience symptoms or side effects, be sure to discuss them with your health care team. They can prescribe medications and/or offer other suggestions that are effective in managing such problems.

Monitoring and testing:

You will be monitored regularly by your health care professional while you are taking accutane to monitor side effects and check your response to therapy. For women of childbearing age, a pregnancy test is required one week prior to beginning this therapy and every month during treatment. Blood counts and lipid (fats, cholesterol) levels and liver function all need to be analyzed before treatment begins and regularly during treatment. These are measured through blood tests.

How accutane works:

Retinoids are drugs that are relatives of vitamin A. Retinoids control normal cell growth, cell differentiation (the normal process of making cells different from each other), and cell death during embryonic development and in certain tissues later in life. Retinoids effects on the cells are controlled by receptors on the nucleus of each cell (nuclear receptors).

There are two major classes of retinoid nuclear receptors: retinoic acid receptors (RAR) and retinoid-X-receptors (RXR). There are also subtypes within each class. Each of these types of receptors has different functions in different tissues. The different retinoid drugs work by binding to different receptors; which, in turn, affect cell growth and differentiation.

Retinoids are relatively new types of anti-cancer drugs. They have been used alone or in combination to treat a variety of cancers such as skin cancers, cutaneous T-cell lymphoma, acute promyelocytic leukemia, lung cancer, breast cancer, ovarian cancer, bladder cancer, kidney cancer, and head and neck cancers. Retinoids have also been used experimentally in an attempt to prevent certain types of cancer. There is ongoing research to determine their role in both cancer treatment and prevention.

Retinoids have been associated with side effects such as skin problems (dryness, peeling, itching, sun sensitivity), reversible elevation in liver enzymes, temporary abnormal lipid levels, low thyroid levels (hypothyroidism), and headaches. Taking supplemental doses of vitamin A may increase the side effects. Vitamin supplementation should be discussed with your physician.

Note: We strongly encourage you to talk with your health care professional about your specific medical condition and treatments. The information contained in this website is meant to be helpful and educational, but is not a substitute for medical advice.

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Thank you so much. I'm going to talk about it with her and see if I can get together with my derm. I still want to take this but only for one more month, not 5 more months.

This really helped me out a lot :)

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Aidan, You really do need to stop if you in that much pain. Please, have you tried light therapy or diet..Your young and hormones play a role, and well having oily skin isn't such a bad thing. Many young kids and young adults have suffered bone, joint and muscle damage. Some have been disable at a very young age from this. I did post above in another post the information that Roche has printed.
If you mother won't listen, then take charge and say you don't want to take it anylonger.
Good Luck

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Thank you for the reply, I appreciate that you took the time to read what I had to say. I have tried telling her, but she doesn't believe me. My derm said that I only need to go on the this for 6 months. I do not have severe acne as bad as I've seen on others; but since my derm tried everything else that's when he suggested accutane. It has helped a lot, I'm just worried. I'm going to try to stay on this for maybe about one more month, since I want my acne to be gone but I don't want to damage my body and get long term side effects.

Thanks again, Aidan.

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Adian-I am the mom that has a 16 year old boy with severe acne and had a severe reaction to Clavaris or generic Accutane. There are many people who did just fine on the Accutane but as you can see, there are some of us who had horrific probelms. Can you talk to your mom about this and show her this site. Your acne doesnt sound very severe. Accutane is supposed to be used for severe cystic acne. The really deep stuff. You may not need it. Really us moms have been teenagers once and have been through severe acne. Your acne will clear as you mature without Accutane. You sound like a very intellegent and mature teen. Please discuss with your parents.

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Also, and my last derm appointment that I just mentioned, my doctor upped my pill intake to 2 pills a day. He said that it's not dangerous to do this and that it's fine.

If just one pill a day for a month is already giving me painful body aches, what will happen if I have to take 2 pills a day? I'm pretty nervous and scared. Another thing is that my mom thinks that I'm making a big deal out of the body pains, and she thinks that I'm just saying it to say it. She really doesn't know that I'm REALLY sore, especially in my back. I'm stuck and not sure what I really should do ;/

Thanks again, Aidan.

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My name is Aidan, and I'm a 15 year old girl who's been on accutane since Jan 4th, 2010. It's been a month since I've been on this pill. I skimmed through almost everyone's story on here. And I'm getting a little nervous. I had VERY oily skin. No matter what I used to wash my face, the oily skin would remain. I tried EVERY possible skin wash, gels, soaps, treatments, topical gels, creams, face washes. Also every brand like proactiv, neutrogena, clearasil, etc. After that, that was when my derm suggested accutane. I thought I did a lot of research, all I saw were people who were on the pill, and their results months after the pill- not years. So far, this pill has helped with my oily skin, which makes me extremely happy. It's at a normal level where I only have to wash it 1-2 times a day and have it normal. I had acne on my cheeks, chin, and forehead. My forehead is completely clear, my chin only has the occasional pimple. My left cheek has cleared up, and a little bit of my right cheek. However, my cheeks are now scarred.The scarring isn't like crater scarring, it's just instead of having a pimple, the spot is red. Fortunately, it covers with makeup. But my goal was to be able to go out without makeup and feel happy with my skin. The side effects I'm experiencing so far on this are: extremely dry/chapped lips, horrible back pain, joint pain (such as in my knees, wrists, shoulders). Before I started this pill, I was already a generally lazy person who'd be tired since if I didn't get a lot of sleep. I'm not sure if the pill is making me more tired because since the pill, I have been a lot more tired then normal. Another side effect I might be experiencing are mild mood swings. One minute I'll be in a happy and energetic mood, and the next I'll be very tired and wanting to keep myself from communicating with people. Two nights ago I went to my dermatologist so he could see the results of my first month on the pill. He went over my blood work and said everything was going good. (If you didn't know, you have to get blood drawn once a month). My mom and I were curious if there were any long term side effects with this pill. He pretty much slurred his words and didn't say much, but he said something like if I get x-rays spots will show up on my spine, something about weakening of the bones. He wasn't clear what so ever, almost like he was hiding something. What I'm thinking is that he knows that there are bad long term effects, but doesn't want to tell us because he could be afraid of getting sewed or the accutane company getting sewed.

Basically what I'm saying is that this pill has ridded some acne and I will be happy when this is over since I am a teen. I used to be so insecure with the way I looked and now I'm much more happier. I'm a freshman in high school and hopefully this will make the rest of my teen years better. However, I really am scared for my future. Is there anyone who can help me by telling me what the long term side effects are, or if anyone can relate to this? This will help me out so much.
Thanks, Aidan.

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Scott- Roaccutane is Accutane in other countries such as the U.K. and such..Roche still sells Accutane in theese countries.
and i am glad that we can help, Keep spreading the word....;)

50yr old- I will pray for you and hope that things get better and everything is okay.

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Acne Dame,

I am glad you decided not to go forward with Accutane. If you have mild acne, the dermatologist shouldn't have even brought this drug up in a discussion.

Ryan is now 19. He has a younger brother is 16. He also has a mild to moderate case of acne. It isn't cystic in nature. Drinking lots of water, cutting soda drinks and greasy foods and taking over the counter medications have help him tremendously.

Although some days are worse than others, he gets by fine without taking the chance of letting a dermatologist hold a hose while they pour gasoline down someones throat.

Having occasional acne breakouts is just part of growing up.

Best wishes... I am happy for you !

When I started this post, I hoped and prayed at least one person would read what I posted. Now many others and we could help prevent them from taking this horrible so called medication.

Everyone on here that has shared their story should be very proud of themselves. You have helped prevented 2 healthy teenagers from possibly taking this drug.

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Hello 50 year old just off Roaccutane,

Is Roaccutane the same as accutane ? I guess I could have googled it.
Good luck at your Dr. appointment, Hope the best for you.

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