Should I go on Accutane / get screened with PCOS?
January 31, 2016 10:06 PM   Subscribe

I have moderate acne, and it's not responded to alternative treatments for years. But nervous to take the Accutane prescribed to me, and wondering if I should pay up for the expensive tests to see if I have PCOS.

(You are not my doctor) Have read through this question, but it seems outdated and not sure if new information has risen since then.


I've had moderate cystic acne that has been on and off for the past four years. I've tried antibiotics, birth control, topical creams....and it worked, for a bit, but then I went on a lower dose of antibiotics and the acne came back with a vengeance.

At this point I am 27 and want the acne over with.

I saw a dermatologist and went over my history with him. He seems to be doing the right things and asked that I do some pathology test before I start. He prescribed it to me and went over the side effects, and will start me on a low dose and then have me check in and based on how I am doing, go on an average dose.

Two questions:

1) I am kind of nervous with all the side effects I am reading though.

Ultimately I suppose I would want clear acne, as I am getting tired of dealing with it, and it's affecting my self confidence.

I am also in Sydney during the summer, and worried about the sun.

2) Should I get screened for PCOS? I've missed my period for about three months while on birth control (not sexually active) and I have acne, but I am not on medicare and the tests may be expensive to pay for with my private insurance.
posted by pando11 to Health & Fitness (15 answers total) 3 users marked this as a favorite
I had pretty bad acne as a pre-teen/early teenager and after rounds of Tetracycline, Retin-A, and other things I can't remember, I went with Accutane. The pregnancy blood tests were unnerving, I couldn't go out in the sun, but other than that I don't really remember anything drastic. I do believe it mostly cured my acne and I only deal with the occasional hormonal breakout.

25 years later, I have had health issues including Achalasia - an incredibly rare esophageal disorder - and various (mostly non-severe) skin cancers. I guess there's no way to know if any of it is related, but I have not spent almost any time in the sun since my early teenage years. As a child, I tanned easily, but around age 12-13 I started getting burned badly. I'm not sure if that's before or after Accutane, or if it made a difference.

If it were me now, I'd give the regimen at a shot. I do it when my skin goes through a rough spell, but it hasn't happened in 5 years or so.
posted by getawaysticks at 10:23 PM on January 31, 2016

I have PCOS (diagnosed 26 years ago at 18 before they offered any medical help with symptoms unless you wanted to get pregnant). I took Accutane in college and while the treatment is slightly grueling (dry skin like I've never known, cracked bleeding lips, endless bloody noses) it was life changing for me and I'm so glad I took it.

That said, given that treatment for PCOS like low androgen birth control and Spironolactone are less grueling with somewhat less scary potential side effects and are known to clear up acne, I might start with those before jumping to Accutane. If it doesn't help, you can move on to the stronger stuff.
posted by cecic at 10:28 PM on January 31, 2016 [1 favorite]

I don't know if it's commonly prescribed in Australia but spironolactone is apparently quite commonly given to women with mild or moderate hormonal acne in the US. I don't know if it'd be effective for severe acne but I've found it very helpful for me overall. It might be something to try in that it has some potentially serious side effects but isn't as drastic a treatment as Accutane.

Also to add: Good for you for seeking out professional treatment! Been there, done that and so, so glad. There is a lot of discussion on the cause of acne, and a lot of people can recommend non-medical remedies and can sometimes even shame people for going to the doctor. While those home remedies are well-intended and may work for some, they never worked for me. Fortunately, medicine prescribed by a dermatologist has brought great results! I look better and feel more confident, which is generally the goal of treatment. Please don't let anyone make you feel guilty for getting treatment. I'd love to be pill-free but the trade-off has been absolutely worth it for me.
posted by smorgasbord at 10:30 PM on January 31, 2016 [2 favorites]

I'm in approximately your position, at least insofar as being 20-something years old and wanting to just get it over with. I'm male, though, so I don't have to worry the whole conehead-babies thing. I was on Accutane in high school; now I'm on a lower dose again. Supposedly about 10% of people wind up having to go a second round, and I'm nothing if not exceptional. /s

It's far from fun, but it definitely gets the job done - I made it to adulthood without scarring, at least on my face. Plus, you're old enough to avoid the really weird side effects. (We're pretty sure it sealed the growth plates on my bones prematurely; I abruptly stopped growing while I was on it.) It's expensive, you're going to have to get very familiar with high-test lotions, and you of course have to put up with the incessant blood testing, but if you need it, it's worth it.
posted by fifthrider at 10:34 PM on January 31, 2016 [1 favorite]

I had horrific cystic acne well into my twenties. I finally found out about Accutane and it changed my life forever. I would take it again and I would pay 100 times what it cost to do so if I had to. I just wish I had known about it sooner, it made my teens fairly hellish. I had no side effects.

Can not comment on PCOS. I am male, and no particular information on that subject. I hope it all goes well for you. Kind regards.
posted by jcworth at 11:16 PM on January 31, 2016 [3 favorites]

If you think you might have PCOS, you should get it checked out. There are health risks to leaving it untreated. If that is what's going on, you may find the acne clears up completely as your PCOS symptoms are treated.

If not, well, I took Accutane when I was a teenager. My lips were chapped constantly, but it worked so well. The course is usually about 3 months, as I recall. Annoying but totally worth it.
posted by ananci at 2:09 AM on February 1, 2016 [1 favorite]

Get checked for PCOS, then proceed. Many years ago a friend of a friend had horrible acne, facial hair, menstrual problems, and just ignored it all. She was a lesbian and it was back in the 70s when many wanted to be "all natural". I heard several years later she had died of ovarian cancer. Eliminate PCOS as a cause of your symptoms before you go on the Accutane, or at least talk more to your doctor about this.
posted by mermayd at 3:44 AM on February 1, 2016

If you have private health insurance I would imagine that they should cover the majority of a workup for PCOS, if it is indicated. It's a relatively limited set of blood work and a pelvic ultrasound that are required to make the diagnosis, in most cases.

I have PCOS and for what it's worth, when I'm on hormonal birth control (or pregnant/breastfeeding) my acne completely clears up. If you had improvement with hormonal birth control, then your acne may also have a hormonal component. There are a bunch of health risks related to PCOS that would make it worthwhile to get investigated if you believe you have the symptoms. To reduce the potential for alarm after this most recent post I want to assure you that links to ovarian and breast cancer are controversial and it's not like if you don't get treatment for PCOS you'll inevitably end up with cancer. The more well established increased risks are for heart disease and diabetes, and if you know that you have it, you can make lifestyle changes to reduce those risks.
posted by treehorn+bunny at 4:21 AM on February 1, 2016 [2 favorites]

I have PCOS and my advice is to look up the symptoms and do a self analysis. If you think it's likely that you do have PCOS, then testing to confirm makes sense. At that point you can make better decisions about treatment. If acne and one episode of amenorrhea are your only symptoms, then it probably isn't likely the cause. I cannot comment on the accutane.
posted by PorcineWithMe at 5:17 AM on February 1, 2016

Another vote for asking your doctor about Spironolactone if you haven't tried it already. It made a huge difference for my hormonal, sometimes cystic, acne. There can be side effects, but much less severe than accutane, and I've had no side effects at all, though I did have to come in for a test of my potassium levels after I was on it for a month, but that was fine. I started at 100 mg/day, which I did for several years and recently my derm cut me back to 50 mg/day, and my skin is reacting well.
posted by Caz721 at 5:32 AM on February 1, 2016

Another Spironolactone vote. (It's an androgen blocker, if you're curious.) I was supposed to go on Accutane but was about to move to New Orleans & the sun sensitivity issue would have been a problem. It worked beautifully for me—I had severe cystic acne.
posted by listen, lady at 5:54 AM on February 1, 2016

It's worth it to get PCOS checked out before going on Accutane, if only because there might be treatment options to explore that have fewer side effects first.

Still - I needed three rounds of Accutane as a teenager to finally get rid of my acne. Yes, that sounds like a lot because it is a lot; yes, I basically napalmed my face. I had chronically dry everything: lips, all mucous membranes, eyeballs. It is amazing what kinds of side effects I was willing to tolerate in order for my skin to clear up. On the brighter side, I was already a social outcast so it didn't exactly affect my romantic prospects (none). And I got over my fear of needles rather quickly due to all the bloodwork.

If you're prepared to seriously stay out of the sun, which includes umbrellas, long sleeves, and sunscreen even if it hurts to put it on your face, and you're also serious about not getting pregnant soon, I'd say go for it. The side effect management is probably better now, especially with a great dermatologist. I never complained because I didn't want to seem ungrateful, as the cost was a hardship for my family.

I have, in my mid-30's, developed some moderate hormonal acne that is controlled with BCP. Up until that, I had perfect skin for more than a decade. No regrets.
posted by juniperesque at 6:13 AM on February 1, 2016

Yes, Spironolactone. I had large, cystic acne on my jaw, back, shoulders and neck/around my hairline my entire life until I started taking it. BCP, steroid injections, every topical cream and antibiotic didn't clear it up, but Spiro did in about 7 weeks so I could wear a strapless wedding gown at 38. So, if you're thinking you'll age out of it... um, probably not. I also have PCOS and they were able to diagnose it by doing a CT scan, I think, which showed the cysts and scarring I have around my ovaries.

My cystic acne was directly related to my hormone imbalance; I basically never had more than a zit or two on my face while I was a teenager, and even less so as an adult. The cystic acne was pretty much anywhere BUT my face, and I went way too many years covered up all summer out of shame.

Your Dermatologist should be able to prescribe it to you -- why not try it for a month? The side effects are nothing compared to Accutane.
posted by Unicorn on the cob at 8:45 AM on February 1, 2016

A note about expensive PCOS tests... They don't have to be expensive. With enough symptoms and some simple blood tests (hormones including testosterone, triglycerides, glucose), that can be enough for a diagnosis. An ultrasound can confirm it by looking for pearl-like cysts on your ovaries, but not every woman with PCOS will have them so it's not a definitive test. Some doctors would like to change the name of the syndrome because not every PCOS sufferer has "polycystic ovaries".
posted by cecic at 9:45 AM on February 1, 2016

Seconding cecic. I was diagnosed with PCOS, albeit a very mild form, based on symptoms and three blood draws. I stopped having periods completely several years ago, and had to switch off of hormonal birth control due to a conflict with medication. Ive had an ultrasound that showed a few small cysts, but it was while looking for a kidney stone.

If you've been told the only way to get a diagnosis of PCOS is an expensive test, try another doctor.
posted by strixus at 12:37 PM on February 2, 2016

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