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The Accutane Diaries

19 Mar

I’ve mentioned in passing that I just finished a six month course of Accutane. I did a TON of research online before and during my treatment, and while there’s a lot of info out there, I feel like I have a few things to add to the discussion. As a disclaimer, I’d like to say that this is about MY PERSONAL experience while on Accutane. This is a major drug that affects everyone differently, and your experience may be the complete opposite of mine. What I found helpful before and during my course of Accutane was reading as many different testimonials as I could, and then picking out which tips and tricks applied to me. Your personal Accutane experience will also depend on your dermatologist. Maybe yours is super aggressive, or super conservative, or like mine, who made me sign a contract promising to get an abortion if I became pregnant while on Accutane. Anyway, disclaimer over. Now to begin my Accutane story.

(This is an Ultra-Mega-Post, and as such the rest of this epic tale is after the jump.)

Accutane Basics

First, let’s talk a little about what exactly Accutane is. Accutane is the most commonly used designer name for isotretinoin. I’m going to refer to the drug as Accutane throughout this post (as patients and dermatologists will when discussing the drug with each other), but I don’t think many patients actually take Accutane itself. I, for example, took a generic called Claravis.  Accutane is a very powerful, very controversial drug used for the treatment of acne.  In the most basic terms, it’s a mega dose of vitamin A that shuts down oil production in the body. It’s also known to have some grisly side effects, most famously birth defects and suicides.

You will see this lovely lady every time you pop an Accutane pill. By the looks of things, she's about 19 months pregnant in this picture.

You will see this lovely lady every time you pop an Accutane pill.

By law, any female patient physically capable of becoming pregnant must take a monthly pregnancy test and use two kinds of birth control while taking Accutane. For awhile there was a string of deformed babies being born to Accutane patients, hence the crackdown. There’s a picture of a heavily (I’d say about 19 months along) pregnant woman with a big no-no sign on each little pill space in your Accutane blister-pack, and each pack includes lovely pictures of a baby’s deformed skull. As a potentially pregnant woman on Accutane, you’ll need to get a monthly blood test proving you’re not with child, take a quiz online proving you know how sex/birth control/Accutane works, and only THEN can you go fill your prescription. It’s a pain in the ass but in my opinion acne is a bigger pain in the ass, so I was happy to jump through hoops for my pills. I could also go into how insulting this program is, and how it assumes women can’t take care of their own bodies without official interference, but hey, I was totally willing to be treated like a damn fool to get rid of my acne, so I probably shouldn’t get too preachy.

Getting Accutane

To get Accutane you’ll first have to have acne. Duh, right? What I mean is that you’re going to have to have acne for awhile. My acne wasn’t severe at all (To me, one zit was severe acne, but if you compared me to many other Accutane patients my acne was a walk in the park), however it was becoming resistant to treatment. I had been seeing dermatologists and using prescription acne treatments for 13 years before I finally took the Accutane plunge. You’re going to need a lot of documentation proving that you’ve tried it all, at least if you don’t have very severe acne and want to try Accutane. If you come into a dermatologists office with truly godawful acne all over your mug, they might get you on the Accutane track right off the bat.

Google "Accutane patient" if you want to see some horrifying acne. I'm going to keep things light with a pic from the Doug episode where he gets a zit on his big ol' nose.

Google “Accutane patient” if you want to see some horrifying acne. I’m going to keep things light with a pic from the Doug episode where he gets a zit on his big ol’ nose.

Accutane was first suggested to be by a dermatologist a few years ago, but I was afraid to take a drug with such a horrible reputation. I have a history of mild depression, and the stories of Accutane patients with extreme mood swings and even suicides totally freaked me out. This was the first thing I brought up with my current dermatologist when we discussed Accutane. He told me that he had been prescribing Accutane on the reg for 30 years, and he’d never had a patient off themselves, or even stop their treatment because of mood effects. He told me that 99.9% of patients that become suicidal on Accutane are teenagers, and I was well past the danger zone at age 25. My derm ALSO told me that every single one of his patients that complained of mood changes while on Accutane decided that they’d be in a worse mood if they had bad skin, so they chose to tough it out on the ‘tane. He made me feel very safe and taken care of, and I decided I could take Accutane with minimal worries. Full disclosure: I was taking a low dose of Prozac before and while on Accutane. My dermatologist said this was fine, and that the antidepressants might actually help with any ill effects on my mood while on Accutane.

So, you and your dermatologist have decided that Accutane is the treatment you need. What happens next? Well, you get a lecture about the dangers of Accutane, and a big-ass book to read, and they send you home. You read the book (you should actually read this book, BTW. It’s your body, not your education. Take it seriously.), come back to the doc, and tell them you’re in. Then you go get a blood test to make sure you’re not packing a fetus (this is if you’re a female patient capable of getting pregnant, which I was, and the point of view I’m going to be presenting. I have no idea what happens next if you’re a man or a uterus-free woman or something). You also sign a contract saying that you understand the potential risks associated with Accutane, promise to use two forms of birth control, and tell the friendly folks at iPledge (the program that controls if/when you can get your pils) just what those forms are. Your blood test results get sent to your doctor, and you wait a month. After a month goes by (during this time you take no pills. You just wait.) you take ANOTHER blood test, because you’re a crafty and/or stupid woman that can’t be trusted to not get pregnant even after a book, website, nurse, doctor, phlebotomist, and whoever else told you not to. After this blood test comes back proving you’re baby-free, THEN you get a prescription. You have your paper prescription, but you can’t just waltz into your local Walgreen’s and get that sucker filled. Nope. First your doctor (in my case my doctor’s official “Accutane Nurse”) has to log on to iPledge and confirm that you’re not with child, and after that YOU log into iPledge, verify your two forms of birth control, and take a little quiz about sex and drugs. The quizzes are incredibly simple multiple choice tests. Tip: If you’re ever confused about an answer, just chose the most conservative, paranoid response. For example, if asked “You think you’re pregnant while taking Accutane. What should you do?” Answer, “Kill it! KILL IT WITH FIRE!” You repeat these steps each and every month while on Accutane. You will get to know your phlebotomist and the staff of your derm’s office and pharmacy very, VERY well.

Course of Treatment

You’ll start Accutane on a small dosage, and your dermatologist will up your prescription slowly as your treatment progresses. Your dosage depends on your size and how well you tolerate the medication. From what I’ve read, most people start at 40mg, then up to 60mg, and finally get to 80mg. I have a tolerance to drugs that baffles even medical professionals (someday I’ll tell you the story of how I had to get twice the amount of expected drugs from an anesthesiologist before a surgery), so for my last few months I was at 100mg a day. The maximum dosage is 120mg, so I wasn’t at the tippy top of the dosage scale, but I think if I had a longer course of treatment or upped my dosages faster I would have gotten there. As it was I took 40mg for one month, 60mg for one month, 80mg for two months, and 100mg for the last two months. There are only certain milligram amounts available, so usually I ended up with two different blister packs of pills at a time. To elaborate: At 40mg I took one 40mg pill each day. At 60mg I took one 40mg and one 20mg each day, at 80mg it was two 40mg pills, and at 100 it was two 40mg and one 20mg. Also, and I didn’t know this until my last two months of treatment, you’re not supposed to take all the pills at one time. So if you’re on 80mg take one 40mg in the morning and the other at night. I guess by taking them all at once I was doing a real number on my liver, but again, I have a freakish tolerance to drugs, so I never noticed any ill effects (nor did they show up on my lab results).

Each time you fill your prescription you'll get a box with three blister packs of 10 pills each. Depending on your dosage you might get two boxes, but it's always ONLY 30 days worth of pills.

Each time you fill your prescription you’ll get a box with three blister packs of 10 pills each. Depending on your dosage you might get two or three boxes, but it’s always ONLY 30 days worth of pills.

Here’s a sad fact: I didn’t see results from Accutane until I finished my course of treatment. Accutane makes your skin do a little purging, so it’s common to have a bad breakout period before things get better. Occasionally, as it was for me, your breakout from Accutane will actually be WORSE than the acne that led to you going on Accutane in the first place. This is hugely depressing, and there’s no way around it but to stick with it. This is when the internet came in handy for me. I read countless testimonials about Accutane experiences, and it helped to know that I wasn’t alone in my suffering. I’d say invest in some good concealer and buckle down for a few hard months. Even on 100mg a day I was still getting breakouts, although they weren’t as bad as the truly dark days around months two, three, and four.

Cost

Accutane is expensive. I wouldn’t recommend starting Accutane unless you have insurance, and good insurance at that. My dermatologist appointments weren’t that pricy, but the monthly blood tests were just under $1,500 before insurance. FIFTEEN HUNDRED DOLLARS. That’s more than my rent. Each month. For two vials of blood. I had amazing insurance and parents that struggled with acne (so they were more than wiling to front the bill), so I paid just under $150 for my monthly blood work. The pills themselves run from $300 to $600 each month before insurance. I paid about $40 on average. The takeaway here is, if you live in the US, BE INSURED.

Making Treatment Easier

To help deal with my breakouts, my dermatologist started doing extractions/injections for me every two weeks. This helped immensely. BUT! You should NOT go looking for extractions outside your derm’s office. I have super tough skin and didn’t react to Accutane as badly as most patients, so I could handle some injections and extractions, plus I was getting treated by the same person who was providing my Accutane and had my medical chart at his fingertips. Don’t go walking into some spa and tell them you want extractions while on Accutane. A responsible aesthetician won’t touch your face while you’re on Accutane, but you might find someone willing to poke at you, and it’s your responsibility to JUST SAY NO. It will DESTROY your skin. My derm only went through with extractions after seeing how my skin reacted to Accutane after a few months of treatment, and even then he tread lightly. Try your hardest not to poke and prod at your skin yourself. While on Accutane you’re much more likely to scar. I’d say if you’re interested in getting your Accutane breakouts treated, ask your dermatologist, and if they say no, then drop it. They know what they’re doing. They certainly know more than you.

Screen shot 2013-02-18 at 2.52.16 PM

While your dermatologist might not provide you with blemish extractions or cortisone injections, they will certainly provide you with samples of various face washes and moisturizers to help your treatment go more smoothly. My dermatologist told me to use only Cetaphil to wash my face, which I already did, and to retire my Clarisonic for at least 8 months (the 6 months I was on Accutane plus at least two months after treatment stopped). He also told me to use Cetaphil lotion on my face and body, and after I complained about Cetaphil not providing enough moisture, my nurse recommended this great lotion from Aveeno. Around month 4 or 5 my derm also gave me a 1% hydrocortisone lotion from his own skincare line to use under my normal moisturizer. This was to help with itchiness and redness. (If you’re in the LA area and need a dermatologist, mine is AWESOME. I’m not going to post his info for the entire internet to see, but you can comment here/tweet me/email me if you’re looking for a great dermatologist. He has celebrity clients! And his own skincare line! And is affordable! Ooooh!) This post is already longer than a hobo’s beard, so I won’t list everything I’ve used while on Accutane. Instead, I’ll save that for it’s own post. Look forward to it on Thursday!

Side Effects

Ok. Now let’s talk side effects. I actually had almost no negative side effects for five months. My skin was dry, but never super dry. My theory is that because my skin was so incredibly oily before, once all the oil production in my skin was halted, my skin was just normal. I LOVED IT. Seriously, I got totally giddy at the thought of putting on makeup in the morning and not having to use a blotting sheet even ONCE throughout the day. And my makeup stayed put! It was incredible. Now that I’m almost two months free of Accutane, I’m feeling a tiny bit of oiliness return, but I’m still off the blotting papers. I hope if the non-oiliness doesn’t last, at least I’ll stay LESS oily than I was before. My previous oiliness also affected my hair, which I had to wash every day to combat greasiness. On Accutane I’d go three to four days without needing to wash my hair. It was amazing. Now I’m still able to skip daily showers, but it’s more like two days max. I’m hoping this lasts too, but we’ll see. I feel like I’m slowly working my way back to Grease City, but hopefully just the suburbs and not the city center.

HOWEVER, month six of Accutane was absolute hell. I think my body just couldn’t handle it anymore. If the side effects were as bad as they were in the sixth month in say, month three, I probably would have stopped treatment. But it was the last month, and by the time I was ready to throw in the towel I had two weeks of pills left, so I stuck it out. What happened? Basically I got slightly depressed, which wasn’t too bad, but I had a major fibro flare up. It was BAD, and it lasted a long, LONG time. It was definitely a fibromyalgia flare up (as opposed to just, like, Accutane-induced muscle aches), so I’m fairly certain a non-fibro patient wouldn’t have the same effects, but I’m also 99% sure this flare was brought on by Accutane. For the uninitiated, a fibro flare basically consists of muscle pains, extreme fatigue, foggy brain… generally being in pain and exhausted all the time. I was basically stuck in bed, or at least at home, feeling terrible. But again, I only had a few weeks left and even if I stopped taking Accutane then, it would still be in my system, affecting me. They say it takes six months after your last dose for a six month treatment of Accutane to leave your system entirely. So to me, it was worth suffering, since I’d probably suffer anyway, and I’m used to having fibro flares affect my life. Now that I’ve seen how my skin has vastly improved after Accutane, and knowing what I was like going through that mega-flare, I still think Accutane was worth it.

After Accutane

I went in a few weeks ago for my first post-Accutane checkup, two months after my last dose. At this point I still have redness and some hyper-pigmentation from acne, but I have ZERO active breakouts. My derm said that the redness and scarring will slowly fade, but at this point my skin is still too fragile to start a different course of treatment. He also told me that my skin could still continue to improve, and that he wants to wait another six months before making any changes, just to see how my skin keeps being affected by my course of Accutane. While I still wear makeup on a regular basis, I now feel confident enough to take Hero on a walk or run to the store without a lick of makeup on. I can’t even remember the last time I would have felt confident enough in my skin to even leave the house without concealer. Accutane was truly a miracle for my skin, and I’m so glad I took the plunge.

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14 Responses to “The Accutane Diaries”

  1. J.Li October 31, 2013 at 4:28 pm #

    Hi,

    Thank you for writing this post! I find it very helpful it since my situation is very similar to yours (you could be taking about me! lol) minus the parental support. In fact, you answered some of the questions that I was going to ask my derm, lol. I’m going to start on accutane soon. Right now, I’m waiting to do my 2nd pregnancy test & blood test. I just took my 1st pregnancy test 2 weeks ago.

    Your skin looks fabulous by the way! Has the oily skin come back?

    Thanks
    J.Li

    Like

  2. Justine January 6, 2014 at 8:24 pm #

    Hi!
    Thank you so much for this post and all your other Accutane related posts. I just took my first pill this evening. Very nervous for what’s ahead yet looking forward to the results in the end.
    Cheers,
    Justine in Wyoming
    P.S. In finding this link on Pinterest I have come to enjoy all your other posts and am reccomending you to friends. 🙂

    Like

    • Sarah January 7, 2014 at 10:59 pm #

      Awesome! Thank you so much for spreading the word about the blog. Accutane is HARD, but it helps when you can read about someone else’s experience. I get compliments about my skin now, and I always tell them, “Thanks! I took Accutane!” I should probably try to play it cool, but instead I just want to let everyone know what a miracle worker it was for me. I hope it goes well for you!

      Like

  3. Lauren February 19, 2014 at 12:44 am #

    Thank you for sharing your experience!! I am in almost the exact same boat as you so am so happy to have read all of this. I am even in LA too! My dermatologist said I have what is called “stubborn” acne. After taking doxycycline after a year and still getting breakout after breakout, (another day another pimple) she suggested accutane. I just registered so have to wait 30 days for the blood test etc. Thank you again for sharing this!

    Like

  4. Laura March 3, 2014 at 4:04 pm #

    Hey,

    Thanks for they Accutane posts, they have helped a lot. You mentioned potentially sharing your wonderful dermatologist and I was wondering if the offer still stands.
    Thanks Again,
    Laura

    Like

    • Sarah March 19, 2014 at 1:15 pm #

      Yes! Are you in the LA area? His name is Brian Mekelberg. He’s a private practice, but his offices are in those two Cedars towers on 3rd St. The whole staff is amazing – I got to know them very well after coming in every two weeks for half a year! I don’t know if you have a lot of experience with dermatologists, but the best way to get seen and not end up spending 2 hours in the waiting room is to book the earliest appointment possible. Once I had to change an appointment to the afternoon and I was waiting for about an hour and a half. Now I always go at 7:30AM and get right in! (This seems to be the case with all dermatologists, at least the ones I’ve been to. It’s great that they start their days early!)

      Like

  5. Becca April 9, 2014 at 7:58 pm #

    I just picked up my first prescription today! So excited yet so nervous. I have a few questions regarding picking up your prescription. If I take my first pill tomorrow, my next derm appointment is a few days after I would be done with my month supply. Is that okay to be a few days off, or should I make sure the lady at the desk schedules me right on time next time I go in? I am thinking about holding off a few days so that my last pill is the day of my appointment. Also when you go in each month, do you have to wait for the blood test to come back before you get your prescription or just the pregnancy test? Because my pregnancy test this week took one night for her to confirm and I could log into ipledge, my blood test last month took like a week for results.

    One last question, did you drink at all on it? I don’t mean full on binge drinking, but a moderate drink or two once in a blue moon. I know the pills are already do a number on the liver I am just curious about your experience with drinking while on it.

    Love the blog, I will be reading it over and over religiously for the next few months. Feels less terrifying to take the drug when you’re not alone!

    Like

    • Sarah April 10, 2014 at 12:26 am #

      Hi Becca!

      Thanks for reading and letting me know you liked the post! It’s so nice to hear that my experience can help someone else. Now for the questions (which I love to answer! If you have more over the next few months, keep ’em coming!)

      1. It’s not a good idea to have any days where you’re not taking pills. From what I understand, the treatment must be continuous. So if you’d be missing any doses by having you appointment when it is, change it! Your Dr should be able to fit you in if you explain that the appointment you have will interfere with your Accutane treatment. If you get off schedule, you have to start all over again AND you have to wait a month before you can even re-start! Seriously. You need to keep a strict schedule!

      Ok. I got all preachy and mom-like but now I’m rereading your comment and it looks like you’re just trying to do it all in one day, like you go to the Dr on the day you need to fill your Rx. I did that one month, and it was dicey, but I made it work. You have a small window in which you can fill your Rx, and I went in to get my pills on the last possible day. They didn’t have them in stock, so I had to go to another pharmacy to fill it. It was a pain, but it did work out. As long as you’re not planning on skipping any pill days, then I think you’ll be ok.

      2. I may not be able to answer this question. Are you saying that you’re taking separate pregnancy and blood tests? I just got my blood taken once every month and they tested my liver and for pregnancy all in one go. You do have to have your blood test results in your dr’s hand before they’ll write you a prescription. That is non-negotiable. I usually went in 2 or 3 days before my dr appointment just to make sure the test would be in and I could get my pills. Again, you have to stay on schedule or they make you start over from square one.

      3. My nurse told me this was her rule with drinking: 1-1-1. You can have one beer OR one glass of wine OR one shot. Not one of each, not three of one, just one period. I tested this out and found out I couldn’t drink at all. I mean, obviously I could physically drink, but I would get SO, SO sick that it just wasn’t worth it to me. I think I maybe had two glasses of wine total during the entire course of my treatment and got so violently ill that I never tried it again (the second time I drank I was checking to see if the first was a fluke, you know, because of science). That being said, everyone is different, so while I got sicker than I ever had from drinking, I would still say give it a shot (pun intended). If you get sick, lesson learned, and if you don’t, then have a drink every now and then.

      Thank you so much for reading and I hope I helped answer your questions. The way my dermatologist handles Accutane is that he has a dedicated Accutane nurse, and she was amazing. Basically all these answers I just gave you came straight from her! She gave me her cell phone number and told me to call her at any time with any questions or problems. I never had to use it, but it was great to have. I’m serious when I say you can keep asking me questions throughout your treatment. I love to be of service. It’s a hard road, but in the end the results are worth it. My skin right now is completely clear. Not a single bump in sight. I don’t think that’s happened since I was 11. And pretty soon (after a bit of hell, I’ll admit) you will likely be able to say the same thing! Best of luck!!

      Like

      • Becca April 10, 2014 at 12:12 pm #

        Thank you so much for all of that info! I will definitely have some questions in the next few months so I appreciate your willingness to help!

        A month ago I went in and had blood drawn to check my liver and to confirm I wasn’t pregnant. When I went in this past Tuesday I just did a urine sample for another pregnancy test, then I answered my iPledge questions Wednesday and picked up my 30 day supply that day. Like I mentioned, if I start on Monday 4/14 I will take my last pill the day of my appointment, 5/12, so I will need to have my prescription ready the next day. And I am not sure how long the blood work will take. So I am going to call the office now and ask if this will be okay or what.

        It sounds like you had an amazing dermatologist! Mine is a sweet older women, and she’s the second I have seen over the past 6ish years I’ve been struggling with this. But after lowering my antibiotics, and my skin getting worse, she suggested now was the time for accutane.

        Like

      • Becca April 10, 2014 at 10:26 pm #

        Also which moisturizer did you use? You mentioned Aveeno, which one was it? I just switched to a plain old neutrogena when I found out the Clinique one I had been using contained mineral oil.

        Like

      • Sarah April 11, 2014 at 10:59 am #

        The Aveeno moisturizer is actually a body moisturizer, but it works great and was recommended by my nurse. I wrote about my whole Accutane routine in another post linked here

        There’s also a review of the moisturizer itself here!

        I hope that helps!

        Like

      • Becca April 13, 2014 at 12:13 pm #

        And my questions begin! I took my first pill. And am now reading the novel of a packet that’s inside the whole container. I’m just curious how many times a day you took it? She has me
        on one pill a day but the pamphlet said something along the lines of once daily dosing is not recommended. So of course now I’m worried.

        Like

  6. Jackie July 26, 2014 at 1:14 am #

    Hi! Thank you for posting this! One question- did you have to deal with dryness of skin to the point of peeling? Were the breakouts while on accutane so bad that it was impossible to cover up? I ask because, like everyone, I have to continue to work and I’m afraid my skin will look disgusting while being treated. My skin right now is similar to yours in that I only have a little but of consistent acne and not a lot.

    Thank you!!!

    Like

    • Sarah August 3, 2014 at 8:32 pm #

      Hi there!

      I did suffer from peeling while on Accutane. Some months were worse than others, and some areas of my face has worse peeling than others. I found a few ways to deal with this, which I detailed in an Accutane skincare post (that link will take you right there). My derm would chew me out for peeling off flaking skin, but I was already so self conscious about my increased acne that I wasn’t about to have sheets of my skin coming off too. I think one of my favorite tricks was a warm washcloth. Don’t scrub your face with anything!! But I found that I could take a washcloth soaked with warm water and just sort of lightly caress my face and that would get about 90% of the flakes to go away.

      Best of luck with the Accutane! It was one of the hardest times for me in terms of self-confidence, but now that I’m sitting here with ZERO active breakouts on my face, I think it was completely worth it.

      Like

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