Accutane Long Term Side Effects (Page 25) (Top voted first)

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 After I have researched this drug extensively, I can't believe that the FDA allows this drug originally made for cancer patients to be marketed for teenagers with acne.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

Nathan, THANK YOU for taking the time leaving such valuable information on the long term side effects of Accutane and it's generic brands on this forum.

Your friend,
Scott

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I took accutane in 1996 for four months. I seemed to tolerate it at the time, with the normal dry hair/skin/lips/eyes and mild joint pain. I was 29. One day twoards the end of the treatment, when I was walking, I developed searing pain in my ankle. It took a while to get diagnosed, but a portion of my talus (an ankle bone) had died, with no trauma. I now have chronic ankle pain, have had surgery, etc. It took me a while to connect it to accutane, but why else would a healthy 29 year old woman spontaneously have a serious bone injury, when it is known what accutane can do to bones.

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I took Accutane about 3-4 years ago. I was 19 when I started the regime and I was on it for 5 months. At the time it was awful. My skin was constantly dry and painful and I barely had to shower because I had no oil on my skin or hair. I am convinced that the Accutane is what made my body develop a kidney stone. My Dad has gotten them since he was 16, so I was at risk for them already and I think the Accutane inflated that risk. It cleared up my acne and even now I only get maybe 2-3 pimples a month and they go away quickly. The only long term side effect that I have noticed is the severe rash I get on my forearms from being in the sun. It isn't that serious compared to the other stories on here, but it was a major issue when I went on vacation with my family right after finishing the Accutane regime. I have become very concerned about long term side effects because of this. So, I was wondering if any female has experience fertility issues after taking Accutane or if it has caused birth defects even years after taking it? I am 23 now and am really worried that I will face issues when I try to have children in the future. Thanks!

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Is it just me or is this drug, and the drug company responsible for making it /Roche...isn't this a form of child abuse??
Pharmaceutical Child Abuse! Years and years of it!
Ws-Yeo, reach out to people who will help you and don't stop until you find someone who will understand all you are going through. Thank you for sharing your story. You are brave and smart for doing so. You HAVE TO tell your doctor before stopping completely. Be completely honest with your parent(s) and very calmly tell them EVERYTHING! Talk. Burden them. That is why we are parents. We live for our kids. If they don't understand, show them this web site.
And just for the record, I too had bad acne, have scars and still have oily skin even as an adult. I did not take Accutane as a teenager, but know what it is like to always deal with it. Oily skin now has its benefits. I don't get wrinkles like some people my age. I still deal with acne. Realize and look around you at people you see everyday. Look really close. They are not perfect. We are not perfect. Some are blessed more than others. It is okay. We should all strive to be pro-active and smart with all our problems. Be more persistent than your most persistent problem.

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By the way Dc, Fort Worth I have tried to tell them about this, and they just laugh at me and tell me that I've got to be kidding.

Oh yeah, and I threw my last subscription away.

I guess it's because there is such a great amount of side effects this pill has caused me, that my parents think that I'm just making up excuses, and think that I'm blaming the pill on what is my fault.

Another thing I've forgotten to mention, is that before the pill, I was able to do push-ups no problem. On Accutane, when I did push-ups, my bones made this cracking sound everytime I went down and pushed myself up. Thankfully, about 2 days after I stopped taking those wretched stuff, it is beginning to stop.

I think it's because 5 days a week, I walked back from school at quite a long distance, and my bag is darned heavy so at least it slowed down the effects. Plus, I did the push-ups anyway because it didn't hurt, just that my shoulders cracked a lot - and after doing just ten, I got tired and my face got red, when I used to be able to do 30 in a row at least.

By the way, I still hate my acne and still want to remove it. I've probably been put off taking any pills for anything now that I've suffered from these pills. Is there anything I can do to remove this stuff on my face back and chest? I heard that diet can determine how much acne you can get depending on what you eat like oily foods and fizzy drinks cause my acne?

Anyway, I have to admit that some pimples have gotten off my face, back and chest but that still leaves a heck of a lot on my.... head, back and chest.

I haven't gone back to my doctor yet, but when I do what exactly should I tell him? That Accutane is bad, but then he'll be like so what? You read the consequences, blah, blah blah... So what exactly?

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Dear Ws-yeo,

I have just read your post. I was the one that started this forum. I must say, like Dc. Fort Worth has mentioned that you are very brave and noble to have shared your story with all of us. You are a very educated teenager just looking for answers. Please remember, that once you quit taking Accutane, there is a possibility that some or maybe all your side effects will go away. It seems to act differently on people, and no one seems to know until being off this medication for awhile.

How old are you now and how old where you when you started taking Isotretenoin ?

Please always tell your parents how you feel especially when something becomes a heavy burden. Ask them to read this forum and keep an open mind while doing so. Although I am not an expert, tell them to email me and I will share my own personal story.

It is not your parents fault drugs like these are still willingly being subscribed to thousands of people everyday. I became informed about this drug just like you are, by researching it and listening to what other people have to say.

Have your parents email if you like, I will get back to them asap and tell them about my sons experience 5 years ago on this drug and how it has effected his life today.

Best Wishes,
Scott P.

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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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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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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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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 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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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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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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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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Certainly dry lips

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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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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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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,
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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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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