So I decided to throw my story in here, it seems as if everyone who is writing here is currently on Accutane, by some name or another.
When I was 10, I went away to sleep-away summer camp, where I was kindly given the nickname "Oxy Girl". The boys would come by my cabin and give me containers of Oxy Pads, bottles of Clean and Clear, and ever-progressing taunts "zittles" etc. I was a happy-go-lucky kid who really tried not only to not let their name-calling bother me, but actually tried to embrace my new persona as the ugly chick with bad skin. I suppose I had no choice, I was living with these kids for 2 months.
I started treatment right after, so it would have been about 1995. Accutane was still under its patent, so that was the only name you could get it under, and it was relatively new.
I had been prescribed Retin-A, Retisol, topical erythromycin, and when none of that worked, I started on oral erythromycin, which helped a little but only for a short period, when not only did my face get really terrible again, but I broke out in hives (and tears) and was taken off it immediately.
As a last resort, my dermatologist put me on Accutane, 80 mg/day. Don't forget at this point I was only 12 years old and weighed like, 100 lbs. Like I said, I was a relatively happy kid, despite my skin, I had friends that I liked who didnt really care about my giant zits. My dermatologist told me of the risks of getting pregnant, and constantly stressed them to me, even though I was only 12 and constantly told him that I was not sexually active at all. I was also made aware of the cholesterol problems that could ensue from being on the drug, as well as the dryness that could ensue.
What I was not told was about essentially every other possible side effect. When my mental health began to deteriorate quickly and fairly seriously, instead of telling someone about it and getting off Accutane, I didn't tell a soul. I cried all the time, I was miserable, and I had no idea this miracle skin drug could be the reason. I also started getting very severe migraines. I had to go to the emergency room once because they thought I was having an anneurism (which I wasn't, thank god) but my general practitioner blamed everything on hormones.
I stayed on Accutane for 6 months, until my skin was clear, save for the occasional pimple (which really doesn't bother me) My skin stayed clear for about a decade, but in the last year, it seems to have been acting up, especially on my chin and jawline. Thinking now that maybe my sebaceous glands are starting to juice again.
Unfortunately I haven't been able to find much information on the long-term effects of isotretinoin, but I can tell you that from my personaly experience, my lips are still in bad shape. I can't go anywhere without medicated lip balm. I have resorted to smearing anything available on my lips, and have been known to use olive oil in restaurants. Colored, sparkly, cosmetic glosses are a no-no because they usually just make it worse. I find baby-oil gel and a few brands of lip-balm work well. The skin on my face has never ever ever (even on accutane) been dry, and I don't even think I own a moisturiser. The nose-bleeds took about 8 years to calm down, I used to get them in class, at the mall, at work, everywhere, my nose would just start bleeding. I do use vaseline (or something of the source) for my nose in the winter to this day, but I only get one or two bleeds a year now.
The headaches have gone away, they took about 6 years after treatment to go away, but I haven't had to use my prescription in 4 years.
I struggled with suicidal thoughts while I was on the drug (which I hadn't ever had before) and a period of time afterwards. I struggled with depression for a long time after that (7 or 8 years) as well, but I haven't taken any medication for it in the last two years and things are looking up.
The other health issue I developed after treatment, which is not only bothersome, but can be serious, is endometriosis. To spare you the possibly gross and uncomfortable details, I suggest you look it up (as a female). I wonder if there isn't a corellation between reproductive dieases and isotretinoin. I wouldn't be surprised.
I really wish I had known about the possibility of these side effects when I was taking the medication, because despite the fact that my face looked like a war zone, I was more miserable from depression than I had ever been from my skin. If I could back and do it all over again, I'm not sure I would. I do think it's great that my skin has been clear for the last 10 years, but at what price?
I urge you all to please be aware of the side effects and to be aware of your mental state. Ensure you know if depression, osteoporosis, high cholesterol, a tendency to headaches, etc. is in your family history. My mom has pre-mature osteoporosis and she can't do a lot of physical activities (like skiing) because of the risk of fractures. I make sure to take calcium supplements every day, and I've made sure to have a bone density scan.
I don't want to scare you all off this stuff because it really is a wonderful thing to be able to have clear skin, and I do know what it's like to be made fun of and to be embarrased and to want to wear a paper bag over your head every day. I also know how great it is to have clear smooth skin. I just really do urge you to be aware of the other risks. It seems that such a huge emphasis is placed on the issue of pregnancy and birth defects. If this medication can do such terrible things to a baby, what could it be doing to you? There hasn't been extensive research on the long term effects of this drug and I'm sure there are people who get a few pimples who are asking to be prescribed it.
I hope you start feeling better! I wouldn't give accutane too much credit for a lot of these problems. But it does seem like accutane has left a negative effect on your life. I hope a lot of these problems just subside with time. My wife has the exact same issue with the really dry lips as you (it's funny you mentioned olive oil, because she does that as well), but she never took accutane, she just has chronic dry lips :/ same with nose bleeds.
The only thing that helps is the aquaphor lip repair for her, if you haven't tried it, I would give it a go. It's $4 a tube here which is kinda pricey, but it works.
I watch my son closely. He is only 120 pounds, but no fat, all lean. I have him skip a dose in the morning if he has a big exam or if his eyes are too red,his nose bleeds too, too much.
The doctirs are prescribing bing this crap, but everyone metabalizes it differently! He will finish ALL of the prescribed Accutanepills...but he does skip one at least twice a week. It might take him a month longer at this rate to hit the cumulative dosage amount needed, but I cant take watching some of the side effects it puts him through. His dose is 30 in Morning, 30 at dinner. Its too high of a dose for him.