Accutane Long Term Side Effects (Page 86)
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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 After I have researched this drug extensively, I can't believe that the FDA allows this drug originally made for cancer patients to be marketed for teenagers with acne.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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Hey guys, please help.

I developed severe cystic acne that has left some scarring. However, in my opinion, most of my cystic acne has subsided and I'm left with a few cysts that have died down in size (but are still there). BUT I don't think all the bacteria has been killed. My cheek that experienced the most cystic acne is just red and inflamed right now, but there's no active acne on it. My guesses at the cause of my cystic acne is STRESS and VERY harsh skin-peeling cleansers that I changed to. I have been on accutane for just over 2 weeks now. My muscles are always sore and tender, my face flushes easily, my body sweats easily, my eyes are sensitive to sunlight already, my sleeping pattern is ruined, and there was a brief period where I experienced suicidal thoughts.

I read all your long-term side effects and it's scaring me.

My derm told me accutane is the only way to cure my cystic acne. Is he weird in saying that or is he right? He hardly explained any of the side effects of accutane either.

I really want to get off accutane, but I feel helpless, because my derm said it's the only way to get rid of it.

Should I try changing my diet and sticking with some form of antibiotics??? As well as the hormone pill or whatever it's called?

Oh yeah, I'm on a low dose too. 20mg/day, and I'm already experiencing those stupid side effects.

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Ive been on claravis (same thing) for about 2 months now and i havent had any problems, except for the dry skin and chapped lips. i am 14 and reading all of this freaked me out a little, but i am on the lowest dose given. so im not sure if people develop these long term cases from having a higher dose and being on it longer?

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Hi Oli girl,
thanks for replying. I will definitely have my thyroid and throat area checked out: I always have had an excessive amount of saliva and mucus build up in my throat since I took those pills. What a load of freakin' side effects that they didn't tell me about...

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Ws-Yeo

Go and have our thyroid checked as it would make you feel cold esspecially in the feet and hands. I myself have thyroid problems, but did develop raynaud's in my right hand only Odd I know...Anyways you would know as if you stick your hand in cold water and take it out it would change colors lasting being very blue. Go get lab work on the thyroid and maybe Iron.

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Trusted Doc's But Shouldn't Have,

Hi. My son also had had ankle pain and swelling on the top of his foot after any kind of physical activity since taking a generic form of Accutane ( Amnessteen). He has had 3-4 x-rays of it over the past 5 years and for has no explained reason from a physician why it hurts with activity. He also gets a pump about 8 inches above his ankle that causes pain. The pump seems to go away a few days after physical activity is ceased. At the present, doctors seem to have no answers.
Not sure about your daughter having trouble with taking certain foods. Maybe a visit to a gastroenterologist may answer any questions you .

Best Wishes to you and you daughter,
Scott

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To Dennis,
I too have been having abdominal pain since on accutane. But I would wager to bet your stomach problems are from the 1600 mgs of motrin you are taking everyday. That in itself will ruin your stomach. I hope you get well soon.

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Hi,
my daughter took Accutane for 6 months when she was 17. She is now 26 and has complained that the lactose intolerance she had as an infant and toddler, which resolved itself in childhood has returned. She has also complained that certian foods do not sit well. These symptoms do not seem as severe as many described but are they possible side effects of the
Accutane?
Another question, I had always suspected that the ankle she broke playing soccer shortly after taking Accutane was some how related to the Accutane but as it was a sport injury it was never looked into. Comments?
Thank you.

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I am 46 and was on accutane when I was 18 for approx 1 yr. I had side affects like anorexia, I dropped from 127 to 115. I had blood in my stool and hair loss. By the time I had all these symptoms, I read up on the drug and decided my dr had me on too high of a dosage. I took myself off of it. My skin has been clear and great ever since. I have had no long time side affects that I know of. I have indegestian but my dad has the same problem. I decided to read up on it due to seeing a legal commercial on TV.

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Hi there everyone, it's been about a week later, and I figured by myself that Accutane has caused me to get Reynaud's disease, because my hands, feet, knees, nose and ears are always feeling cold now - and I'm only 16; and this disease isn't supposed to be caught until I'm at old age. Accutane is a piece of s**t.

Is there any way to get rid of Reynaud's disease? I had a quick Google search, and nothing seems to help. Is there even a cure for Reynaud's disease? Because it's made me really cold, and I start shivering in pretty normal temperatures. :(

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I am really surprised at the length of time that it seems that your doctors are putting you on Accutane. I took it back in the late 1990's for cystic acne. I was only allowed to take it for 5 months and even then I had to have blood work done monthly to measure my trigylceride levels were within a normal range and verify I wasn't pregnant. It was my understanding at that time that doctors were not supposed to put people on extended treatments, but for these shorter treatment plans. I was fortunate because after dealing with many other treatments for my acne over my teens and early 20's, Accutane completely cleared up my skin and I have never had a problem since.

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Thanks, Dc, Ft Worth.
I have mentioned it to my podiatrist-considering surgery on one of my feet. He couldn't figure out why the bones in my foot look as if there had been major trauma-other than stress fracture when I was a heavy runner. Accutane also has a rep of interfering w/bone formation/ repair/even w/ minor injury. He was very concerned about it-he said the he noted it in my present medical record as well. And he too suggested that I make a point of making certain all of my doctors are aware of it...

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Certainly dry lips

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Ws-Yeo, Sorry I couldn't give you a more direct answer. I am just a mom with lots of questions myself. You did take my advice and were very persistent. Good Luck. PurpleAnne: I wish our son mentioned it to each doctor he saw. We had no idea that he would have to mention an acne drug he took 6-7 years earlier. Almost seems you need to have a tattoo that says, Previous Accutane User...almost like a warning label. Really do mention it. I feel it has to be considered. I feel it has to be considered with each drug you take from now on. My opinion.

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I came across this site while doing some research on the long term side effects of accutane. I was curious-seeing all the ads from lawyers abiut accutane lawsuits. I too took accutane around 1987 or so. It was only prescribed after all other durgs failed. I did suffer from side effects while taking it- dry skin,cold Sx's , nosebleeds. It did however, clear up my acne. Now I'm wondering if any of my current medical issues are due to that long ago use of accutane. I have acid reflux, irritable bowel syndrome, and bone loss and damage. Had sleep problems for years,muscle aches. fatigue-dx as fibromylagia to this point. Now being treated for major depression-which may of course, be due to life circumstances. Think I'll start mentioning my past use of Accutane to my docs. Good luck to everyone out there.

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My daughter was a Jr. in high school when she took Accutane. She will be a Senior in college this next fall, so it has been four years since she took Accutane.

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Hey Douglas,
Thanks for the response: and I mean it; you're the only person who actually answered my questions rather than avoiding/ignoring it like everyone else.

About the 7 month thing, let me explain: I took the pills for 6 full months; the first month and I think second being at about 20 mg (month 1-2), then for the rest of the months I took it, I took it at 80 mg - 1 being in the day and one at night (that is, months 3-7); and I stopped about 3-4 days into the 7th month when I started to notice a lot more severe side effects.

Anyway, I think I'm beginning to heal and am feeling less and less of my painful muscles everyday, though it still somewhat feels painful once in a while without much stress put on them (being standing up and sitting, I can sometimes feel it, but not much other than that) and with the odd cracking of the bones on my hand... and that my voice seems to be slightly more vulnerable whenever I use it any louder than my speaking voice.

I'll try to stop worrying about this but just to clear another thing up, Accutane/Isotretenoin hasn't exactly cleared up my pimples on anywhere where I had and still have pimples - it's just reduced the amount at a very slight degree.

Thanks for the suggestions about the 'liver panel' thing; I will ask my doctor about this, and hopefully he will get this right; I guess I can give him one more chance as it's only checking for things that are wrong with my liver.

I do hope I recover though, as I don't want to be burdened with what old people have to worry about at this age (no offense if you're an 'old person').

And again, thanks for everyone for their support of someone they don't know.

Thanks!
Ws-Yeo

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SoftBall Mom- Yes Accutane can cause intestinal and stomach problems. In fact It is a documented side effect that it causes IBD/Chron's and other gastro problems. I have read many stories like your daughters and for some it has taken years to get an answer about thier intestinal/gastro issues. How long ago did your daughter take this????

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Hey Ws-yeo:

One more thing. I've re-read your posting and don't have a firm grasp on exactly how long you took Accutane (how many months). Can you please tell us in total how many months that your physician continued to refill your prescription? If I read correctly, I think you say it was about seven months, but at a very high dosage. Can you just confirm that?

When you see your new physician, which I hope is immediately, please ask him/her to perform a complete liver panel on you. Also, the blood tests they do while you are on the medication is to check your lipids (fatty cells) and cholesterol levels.

So, when you see your physician, they will probably do a normal blood screening, but ask them to do a compete Liver Profile and a Lipid Profile. Your physician should check the health of your liver and see what your lipids (HDL and LDL) levels are.

Depending on how long you have been off of Accutane might effect your Lipids. You want to stress to your new physician to continually check your Liver Panel for the next six to nine months.

We KNOW that these are the immediate, known effects that Accutane can cause havoc on your system.

Remember, after you stop taking Accutane, your body will continue to heal, so don't be discouraged with having the severe acne you have now. Wait a couple of months and see what improvements you have in your complexion.

As you can see from this discussion, Accutane can continue to do good things after you stop, as well as terrible things. Hopefully you won't fall into the category of any long-term side effects. Statistically, you should not have long term side effects, however, nothing is for sure!

I would just recommend that you not be stressed out about what MIGHT HAPPEN in the future and just take care of what you can now. Again, more likely than not, you shouldn't have long term side effects. You are too young to worry about that. It is a great thing that you stopped taking Accutane from a physician who doesn't know how the medication works, or how to administer it.

Good luck and get a Liver Panel and a Lipid Panel as soon as you can. If you get your results back on the lipo-proteins, ask your doctor, but really do your own research. On your test results, you will see HDL (High Density..) and LDL (Low Density...) levels. Do some Internet research on your levels and see where your levels fall on each.

Remember, Physicians do NOT know very much about nutrition and how to control your LDL levels by what you eat and exercising.

You have to take control of your own body and keep it as healthy as possible. Prevention is the best action you can take to avoid anything which may happen in your future. Treat your body right and continue with your follow-ups.

All the best!

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My daughter started taking accutane her Junior year of high school and was on for six months. It did take care of her acne problem and she now has a beautiful complexion. Jump to the end of her Frosh year of college. Doubled over with abdominal pains. She had her gallbladder removed although there was never any gall stones after the third or fourth trip to the emergency room. She has also been scoped from both ends to see nothing out of the ordinary. Suffers from digestive problems to this day. College athlete her first two years, quit collegiate athletics because everything she ate went right through her and she suffered from anemia and dehydration. Decided trying to be healthy was more important than athletics. Another trip to the ER last month with what we thought was a bad appendix but the tests came back normal. Is this all related to accutane? I don't know but something isn't right and we aren't finding any answers. Is it a possibility? Definitely!

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Thanks for your suggestions and response Douglas. Yeah, I'm definitely not going to use that doctor again ever; especially since he gave me a ridiculous amount of Isotretenoin/Accutane to me (80 mg a day).

Douglas, I stopped taking Isotretenoin/Accutane because it was starting to cause me a lot of pain in the last days of the last month, such as my bones started cracking quite a lot, and I wore down easily (my muscles, that is.).

Anyway, the only cystic acne I have left are some on my cheeks. I still have a decent amount of normal acne on my forehead, around my ears, my back and my chest.

One thing I want to clear up: I didn't actually have a lot of muscle aches and bone cracking while I was on the drug (though there was some cracking, it wasn't very much); but about now (3 days after the drug), I still have a slight cracking sound whenever I try to do push-ups or anthing which has to do with bones around my shoulder blades. And when I just whirl my hand. What I'm trying to get at is how long did it take for the side effects that drug had on you, to wear off? Because it's really worrying me because I don't want to get arthritis at this age, or at any age. Please respond.

Thanks~!
Ws-Yeo

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