PCOS and Accutane

yup

So, yes. 120mg. 40mg 3x daily, and I've been at it for a few days now. And I feel like the world is laughing at me, but now I'm finally starting to feel the Accutane. My lips are reaaaaally dry, like I would gladly take the dryness I had last week over this, and I've been having a headache for the past couple days, feeling a little tired, and randomly? Very hungry. This could be because of DST, though, so stay tuned. I'm sure you're just dying to know what my body's doing, lol. Face skin = fine. I suspect that Cetaphil is a miracle. Arm skin = oof. Not pleasant, but Curel is fixing it up. Everything else is basically just fine. I suppose that even in the spectrum of Accutane side effects, what I have still would qualify as fairly mild, especially since the skin on my face seems to basically be perfectly fine. I don't understand how, though, since 120mg is such a high dose.

Praise be, ppl

The Accutane love saga continues. I get little zits here and there, but they aren't really cystic, they're just.... zits. I mean, what a novelty. There are normal pimples! Ones that don't bleed! (Praise be! etc.)

So I had my doctor's appointment day before yesterday. Stupid, stupid Quest lost my blood test results, so I went and they told me they had nothing. Oh. So I ended up taking the pregnancy test and going for a new blood test immediately. They got those results the next day, and it seems to be fine, so I should be able to pick up my new prescription tomorrow. Because of all the confusion, I'm not entirely sure what the new dosage, but I think I'll be taking Accutane 3x a day now, so I'm pretty sure he's putting me at 120mg. Like I said, this derm is very aggressive, but I trust him quite a bit. If it gets unbearable for some reason, I can just drop back the third dose.

Side effects: still not awful at 80mg, two months in. The Accutane is brutal on the dryness, but for me, it looks worse than it feels. I am unbelievably lazy about moisturizing, but I haven't gotten any horrible eczema patches or anything. My lips peel like crazy, I apply Carmex a couple times a day, and it's all good. Face skin actually isn't that dry at all.  My nails seem to be getting a little weak, but let's see. I think the biotin is doing great things for my hair (1000mcg) but the growth is still very new.

Annnd that's about it. I'll put up what my new dosage actually is when I get it tomorrow. But like I said, praise be. My skin looks amazing, every single day. I love it. I feel amazing, like I don't have to worry about my skin and makeup, because it stays on better and looks better anyway, and yeah. It's awesome. Accutane is a miracle.

the oh. my. god. update

You guys. Seriously. Accutane = miracle. (I'm sure the new-found dedication I have put towards a diligent new beauty routine is a contributing factor, but STILL.) My pores are smaller than they have been in years. I haven't had a true cyst in a couple weeks. My skin FEELS tighter and smoother to the touch. This isn't in terms of the actual number of zits I have, but in the sense of the actual texture and feel of my skin (plugged pores, blackheads, large pores, etc.) even when actual cysts aren't there. There are some visible yucky spots, but I suspect what I once thought were just especially enormous pores are actually some pitted scars, and Accutane can't fix that. No blackheads left on my nose, and the pores are shrinking too. The #1 mantra is DO NOT TOUCH YOUR FACE, but sometimes I just can't help it. It feels so damn good to have skin this smooth, and I literally cannot even remember when my skin has ever felt this nice. I do know that pore shrinkage isn't a permanent effect (they'll probably enlarge back to some degree when I'm off the Accutane) but it will HELP, and in theory I should be able to work on the pores later without new acne making them even worse. In short: AMAZING. Just amazing. I think that the rumors are correct, that Amnesteem really is a little more gentle on your body and easier to deal with than the other generics. Ask your doctor though, don't quote me on it. It's still an unproven claim.

I actually had two days last week when my skin was 100% clear. Not a single zit or cyst or scab or emerging zit under my skin or anything. I got compliments on how nice I looked, my makeup sat amazingly, it was just awesome. I'm looking forward to more days like that. I got a little lazy about washing my makeup off this weekend and I also didn't drink enough water. Now, I have some small ruddy irritated spots and a couple tiny scabs, and it kind of looks like little bits of skin are peeling off in a couple places, probably from dehydration. I truly have not had an actual cyst in a couple weeks, but I have had smaller, close to the surface zits that clear up very, very quickly. I am dead sure that drinking copious amounts of water prevents the initial breakout and just prevents the side effects in general. I'm talking like, one or two enormous glasses per hour. I spend half my life in the bathroom now, but it's worth it.

The side effects are SO bearable as long as I drink water, and I'm on 80mg, and probably going to end up on 100 or so next month. (Fact: my derm is extremely aggressive when it comes to Accutane. I love it.) When I get lazy about keeping up with it and start feeling thirsty, that's where the problems start. My knees and feet might start aching, I get incredibly itchy and visibly dry, a little tired, my lips just revolt, my skin starts looking flaky and irritated, some new zits start popping up, etc. None of this happens when I'm hydrated enough, and even my lips are 100% fine. I haven't had to deal with a nosebleed yet, and (again with the water!) have not yet had to go out in a public with a visibly flaky face. Just... drink water. Eat healthily, avoid overly salty/greasy foods (it'll dehydrate you) and have a lot of yogurt so that your stomach won't get irritated by the Accutane, especially at higher doses.

The New Regime to Take Care of Hair, Skin, Nails - Day 33

A "What Cosmetics Routine Works For Me" is right after this summary...

Well, technically, now I'm a day or so behind. All this damn snow (thigh deep! dear lord.) made it impossible for me to keep my original appointment, and I ended up missing a pill because my refill was late. So! We shall just call this 'Day 33 of actually taking Accutane' and leave it at that. It probably doesn't make any difference long term, but just sayin'.

So, my dose got doubled, and now I'm taking 80mg. I had the generic Claravis for the first month, and now I have Amnesteem. I've heard rumors that Amnesteem is a little gentler with the side effects, so let's see if it makes any difference.

Now, the beauty regime!

Face

• Basic routine: wash and moisturize morning and night. No exceptions, ever. You will pay the price the next morning in excessive dryness and blotchiness if you don't. Wear makeup as little possible. Put it on right before you leave and take it off as soon as you get back so your skin can breathe.
• Ditch any and all products that have even the slightest hint of 'oil control' or 'acne' or 'blackhead' or 'alcohol' or ANYTHING similar in the name. No toners, astringents, nothing. Accutane is abusing your skin enough, all these things will just make it worse. Switch to a cream cleanser. I use: Aveeno Baby Soothing Relief Creamy Wash. It does a great job, even for makeup. My derm suggested La Roche Posay Toleriane, which is very good, but also relatively expensive. If you like splurging at Sephora, try Philosophy's Purity Made Simple facewash. I'm working through some samples I got, and I really, really love it. It does an unbelievable job removing makeup, no lather, very gentle, doesn't dry my face out. Give it a shot, I'm considering getting the full size bottle (24oz = $40... sigh.) once I'm off the Accutane. The other classic option is Cetaphil. Almost everyone loves this stuff. I haven't tried it though.
• Moisturizer - ditch anything that has fragrance. It's incredibly irritating to your skin, especially when it's on the dry, irritated side. This goes for ALL your cosmetic products. I'm using Cetaphil cream for the night, and Neutrogena Visibly Even SPF 15 during the day. (Which isn't enough, but I have dark skin, so I can sort of get away with it in the winter. Lighter skin should use SPF 30.) On days when my skin is *really* dry, like even the Cetaphil isn't completely fixing it, I'll moisturize and then put a THIN layer of Vaseline on the dry areas before I sleep. It works like a charm, but Vaseline isn't the greatest thing to put on your skin on a regular basis. Another trick is to smear excess Cetaphil on, but don't rub it in. Just let it sit for 20 minutes or so, it'll absorb and really relieve the dryness.
• Note on Vaseline - it's not a moisturizer. It will seal moisture in, however. So putting just Vaseline doesn't provide anything extra. It's only useful if you use moisturizer underneath.

Lips

• Oh, this is the worst of the side effects. Carmex, Burt's Bee's, Rosebud Salve, some regular Neutrogena stuff has all been wonderful. Re: that note on Vaseline up there, apply this stuff then put a thin layer of Vaseline on top every time you possibly can. If all you have on you in Vaseline, then use it. It's better than nothing. I've been known to rub the leftover Cetaphil from my hands onto my lips after I moisturize my face when I've been really desperate. There were a couple days when they were so red and painful that the only thing I could think of was to apply straight Neosporin. It worked beautifully, even if it was a little gross.

Body

• The body dryness is brutal. Moisturize everywhere as often as you can, and keep moisturizer in your purse for your hands. You will need it. I pink puffy heart Curel. It's amazing stuff, the one in the blue bottle. And cheap!
• Use a moisturizing body wash, if not a cream based wash. Using a cream based wash isn't as important for your body as it is for your face, but it will definitely help. The Aveeno Baby stuff I use for my face would be fine as a body wash too. Just remember to go fragrance free!!!

Hair

• I probably spent the longest time researching this. I have long, long hair, past my waist. It's also pretty coarse, thick, and dry. This is... the worst scenario, because the Accutane might dry it out to the point it just starts breaking off. I will not let this happen!
• I'm washing my hair 1-2 times a week, depending on how oily my scalp gets. Yes, my hair really is this dry, trust me. I cannot wash it more than that, it'll turn into straw. I never blow dry, and the max I straighten is once a week, for the weekend. If I need to wash a second time in the week, I skip the shampoo and only use conditioner to keep it from drying out too much.
• For now, I'm just sticking with Herbal Essences, even though I know I should use something better. Oh well. Gospel truth for hair: shampoo your scalp. NOT YOUR ENDS. Condition your ends. NOT YOUR SCALP. I cannot even begin to tell you how much healthier and manageable my hair became after I started doing this a few months ago.
• There are a million things you can do if you notice dryness. My scalp started getting flaky, and I'm nipping that right in the bud. No dandruff shampoo, I figure that'll be too irritating, and since the flakiness is from dryness, I'm trying to get moisture/oil back in. (If the following stuff doesn't help, then it might actually be dandruff. Try Denorex or Head & Shoulders or Selsun Blue, etc.)
• On that note! Precondition your hair before washing. As an experiment, I took a decent amount of baby oil (yes, the J&J variety, and no, I'm not crazy) and really rubbed it into my scalp. Left it in for about half an hour, and then washed and conditioned normally. Flakiness GONE.
• J&J is nothing special. Sephora sells some incredibly overpriced jojoba oil hair oil, if you would like. Me? I'm heading to an ethnic store (it'll be a fraction of the cost of mainstream stores) and getting a small bottle of coconut oil. It smells, but it'll get washed out, and coconut oil is the oil that is best at absorbing into the hair shaft.
• DO NOT turban your hair after you wash it. This leads to breakage, and all that 'baby hair' around your forehead. Squeeze it with the towel (don't wring it out either) and let it air dry. Heat process it as little as possible. Put a leave in conditioner in every day. I vote for Biosilk Silk Therapy.
• If you heat process, you must put a serum on first. Biosilk Silk Therapy Serium has been a godsend for me and my dry hair. Check ebay, I got a 1 liter bottle for about $50, which is fantastic. It lasts forever, also. I've had it for a year, and I've gone through maybe 1/5 of the bottle, on my waist length hair. TOTALLY worth it.

Vitamins

• I'm taking two supplements. A Rainbow Light brand multivitamin for women, and Nature's Bounty 1000mcg of biotin. Biotin is supposed to help hair, skin, nails, and metabolism. I've heard amazing things about it, but it's going to take a few more weeks to see if it's making any difference for me. The reason I'm using these two brands is because they're minimally synthetic and as natural as possible, which means your body is more likely to actually USE what's in the tablets. A lot of the cheaper, more synthetic pills pass right through your system because your body isn't as good as absorbing it.

Above all: DRINK WATER. Drink more water than you've ever had in your entire life. It will serve you well.

Day 22 - 40mg - Plugged Pore Central

So I just took my 21st pill last night. I’m still trying to figure out exactly what has happened as a result of the Accutane. Yes, there are things that have changed, but it’s all relatively minor and random, and not necessarily just because of the Accutane, side effects wise.

The one thing that I can say is a result of the Accutane is the ridiculously plugged pores that I have now. It’s insane. My skin has never purged like this before, which I suppose is the point. It’s all over my face, but especially around my nose and chin. The pores around my nose have always been horrendous. They’re so stretched out, which is both a symptom of past acne as well as oil production. I can actually see and feel all the crud that’s leaving my face. Totally gross, but oddly satisfying, because it means this stuff is working. A few of my pores actually seem to be getting smaller already. I don’t seem to be having an initial breakout, just a few blemishes here and there, and overall, my skin is doing MUCH better. I suppose there’s still time for a more brutal breakout to start, but my hopes are high. I’m making sure to drink a ton of water and eat well, which is supposed to help prevent it.

As to the other side effects… the dry skin really isn’t bad at all, as long as I stay on top of things and don’t get too lazy about moisturizer. I’m still not overly thorough. It’s not like I’m actually full body moisturizing every day, but it’s apparently enough. My scalp is getting pretty flaky, but I’m finding ways to deal with that also. Cetaphil + occasional Vaseline is more than doing the trick for my face. I’m using pretty much any moisturizer I have near me for my arms and legs, and cream cleansers for my face, which is an absolutely fantastic skincare revelation that I plan on continuing even after Accutane. Ditch the sudsy, lathering, harsh cleansers, people! Your skin will thank you. A more detailed skincare/cosmetics post is forthcoming, once I’m sure that my new routine is really working. I’m actually not having much of a problem with my lips, which is surprising. Just lip balm in the morning and evening and Vaseline before I sleep. Over and out.

Day 13 - 40mg

And so it starts. I think I'm starting to dry out. Weirdly, not so much on my face/lips. Maybe that means I'm doing something right? They are dry but very manageable. I had a relatively more annoying dry patch on an arm and my scalp flaked like CRAZY. I'm starting a post about an Accutane beauty regime.... I'm testing out a bunch of 'methods,' and some of them have actually worked very well. I'm dead sure my skin/scalp would be in horrible shape by now if I hadn't found some (easy! cheap!) things that work. I'm going to make sure it keeps working, and I'll probably put it up by next month.

Day 10 - 40 mg & a PCOS history

Oh, Accutane. I do not understand thee. No real side effects, and 40mg is high enough to produce at least some side effects by this point. My skin and eyes aren't really dry, I don't seem to be having an initial breakout, just my own regular brand of acne on my cheeks. The only thing I can think of is that I have a lot of plugged pores around my chin, but I think those have always been there. Let's see what happens. Yeah, there's a little bit of dryness, but I think that's just because of weather and artificial heat. My mom woke up with a nosebleed from the dry air, so I don't think my very mildly dry skin is anything special just yet.

So, today is Day 10. I'm on 40 mg to start. My dermatologist seems to be fairly aggressive with his treatment - I'm not entirely positive, but I'm under the impression that he wants to hit a peak close to 2mg/kg if possible. This is the highest prescribed dose, for the most severe cysts, but it seems like he wants to do that for every patient, since it also appears that Accutane is most effective (least recurrence of acne) at a dose of 100-120mg. I haven't weighed myself properly in probably a good eight months. My guess is that I'm probably 63kg, give or take a couple pounds. I *think* he won't actually hit 120mg (although he could) and my guess is that I'm going to peak at 100mg. He definitely knows what he's doing, but he's also fairly gruff and brief and I'm going to have to find out for sure at the next appointment.

Onto my acne and PCOS. (This is going to be long - if you don't want the backstory, skip to the last paragraph, especially for PCOSers looking for info.) Honestly? My acne right  now is not terrible. There are actually days when my skin is basically clear, except for the scars, and looks really awesome with proper makeup on. However. The acne I do get IS cystic, and it's damn persistent, and there are most definitely legitimate reasons for me making this choice. I'm just putting this out there for people who are trying to figure out if their acne warrants Accutane. My skin between the ages of 11 and 15 was a freak show. I'm not even joking, it actually looked like I had dark, almost black, SHEETS of congealed blood underneath the skin of my cheeks at times. Even when it didn't look like that, the acne itself was still horrific. It was the kind of acne strangers pointed at and gave unsolicited advice to out of pity. I went on every. single. medication my pediatrician/derm could think of, both topical and oral. When I was about 13, I finally got a blood test done. My testosterone levels were off. Not horribly, but by a large enough margin that it was obvious I needed to see an endocrinologist.

I'll cut this hellish saga short - birth control pills (Yasmin) did not do a thing for me, and my doctor refused to listen to me b/c I was so young. I still want to weep over all the time I lost in fixing my body. After wasting three years on pointless treatment, I finally found a doctor who would listen. He reassured me that there were other options than the damn pill, which I swore I would never go on again. He put me on Metformin (Glucophage to some) and Spironolactone (Aldactone). Fairly high doses, too. I'm still on pretty much the same... I have to double check, but it's two 750 or 850 pills of Metformin a day, and he'd initially wanted to put me on 200mg of spironolactone to deal with the facial hair. Over the last few years, I've pretty much shed that off, and I'm really only taking the Metformin now. I've gotten laser treatments for the facial hair, which has gotten MUCH better, but I still definitely need to wax or thread every month or so. It's more than the average amount of facial fur, but so, so much better.

The Metformin was the charm. It took a few months for my body to respond, but for the last three or four years, I've had my period more or less every month. My cycle is more like 35ish days, but it's regular. I can't even remember the last time I've truly *missed* a period, which happened all the time before I got diagnosed.The facial hair is much better. My metabolism isn't, BUT I'm still pretty average in weight, which is quite the accomplishment with PCOS, anyway. PCOS related obesity has never been a problem for me. The acne got MUCH better also, but still, qualifies as pretty bad by normal standards. I highly recommend Metformin. But obviously, some people will just respond better to other treatments. It's important to find a doctor who's willing to explore all your options.

Now then, to my point. The Accutane! I debated for years. I even registered for iPledge and then backed out at the last minute. My acne was horrendous, and there were multiple times when I had to go in for emergency cortisone shots when acne cysts started getting to big around my eyes or grew so far into my lip that I couldn't use my mouth. If my regular derm wasn't available, the sub would literally walk in, look at me, and ask me why I wasn't taking Accutane before even saying hi. The answer was that I was terrified of using such a strong drug when my acne could have been all PCOS related - Accutane wouldn't treat that.

I finally understood something. PCOSers, pay attention! I know some of you have doctors who will not put you on Accutane because they say that you will not respond. This... is only partly true, at best. Here's the thing. There are different kinds of acne. Noninflammatory. Inflammatory - cystic. Environmental/bacterial whiteheads and blackheads. Hormonal. The last is what us PCOSers have. Every one of these types of acne require different treatments. Sure, you have cystic acne. But some of that is due to hormones and some of that is due to overactive oil glands. Here's the theory, which every doctor I've spoken to agrees with: the Metformin has dealt with the hormonal component of my acne, and what's left, these bloody (literally) cysts that I have time and again, are the type of acne that Accutane can kick. If I take Accutane and stay on top of my hormone levels, I should achieve clear skin. Right now, I have less acne than I ever have, and at first glance it's probably mild to moderate. However. Even if I don't have very many of them, nearly every zit I have is a cyst that eventually dries out and bleeds all over my face, scabbing and scarring. I rarely get a typical whitehead or blackhead, 99% of the time it's a cyst, whether mild or severe. That's NOT OK! No one, PCOS or not, should have to worry about their face bleeding in the middle of the day. I finally reached my last straw this December, when a cyst grew so far into my lip that I looked like someone had punched me. It HURT, man. It was so painful, and took forever to go away, and I'd had it. I made an appointment, went through the iPledge process, and actually went through with it. Hopefully, I'll have no regrets. So far, I think I'm making the right choice.

The Last Straw

Well, hello. I guess I have a blog.

So, yes. I'm starting Accutane. And as you can see from the title of the blog, and this post, I also have PCOS and I have reached my last straw when it comes to goddamned cystic acne. There is no dearth of Accutane journals out there, but I have a goal, a really specific reason for starting my own. Because of my PCOS, the decision to go on Accutane was extremely complicated, and it took a good six years to finally do it. Four years ago, I went through the motions and registered with iPledge, and then backed out at the very last second... because of the PCOS and my doubts as to how effective Accutane would be. On and off over the last five years, I have halfheartedly googled things like 'PCOS and accutane' to try to find some answers and have turned up with exactly nothing useful, journal-wise - a few standoffish articles and shaky medical literature, but no good personal accounts written by PCOS patients who have made the decision to go on this drug.

Now I'm going on it, and I'm paying it forward by starting this blog. I hope that just a few people who had (and have) the same doubts that I did (and do) find this little corner of the internet, especially for girls with PCOS. I don't know what exactly is going to happen when I'm on Accutane, but maybe whatever happens will help someone out later who's trying to decide what to do.

I'll be starting Accutane at the end of this week. I have finally managed to retrieve my prescription from CVS, which was quite an ordeal, and am just tying up a few loose ends, like the last time I can wax for the next year (!!!) before I actually bite the bullet.

I plan to update regularly, put up a few pictures, and talk about PCOS a little. Let's see how it goes.