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suzyd

Just Want To Add My Accutance Experience Thus Far

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After incessantly reading everything I could find about others' accutane experiences, from the first pill to the last day, I feel it's only fair to post some of my own as I go through the process.

History: I am a healthy 39-year old woman. I started getting cystic acne around the age of 20 (I had somehow been spared even the most minor pimple up to that point). I know many of you know what I mean when I write "cysts", but just to be clear, I am referring to swellings and inflammation that starts deep under the skin (sometimes I could feel one coming when I washed my face that I hadn't noticed until I put a bit of pressure on it). My cysts tend to develop on the sides of my nose iself or the cheek area right next to my nose OR on my chin. They get big, red, and angry almost every time. I've had some the size of a pea, others the size of a grape (not exaggerating). The rest of my skin is okay--some redness/rosecea type flushing, the occasional pimple, fair amount of blackheads and enlarged pores on my nose and cheeks.

I went through a helpful course of tetracycline for a couple months for my first cyst, but the response was shortlived. More courses of antibiotics followed, but the cysts eventually always recurred. I had years where I'd just get one or two for the entire year; other years where they happened more monthly. About 6 years ago I started taking doxycycline, which helped for a while. Did clindamycin, metrogel, bp. Then the cysts started again. I was switched to minocycline, which again helped for several months, but was switched back to doxy when it seemed to stop working. Finally my doc sent me to dermatology. I was put on minocycline again, as well as topical Retin-A. Again, some improvement, but at no point did I feel like it was completely managed. Add some stress in my life, stay up too late (thus delaying my face washing), skip ONE pill....and a cyst was just waiting to start brewing. My doctor suggested accutane about 5 years ago, but the very word freaked me out and I was adamant about refusing.

Finally, last winter, I had some bloodwork done for life insurance and my labs came back with ridiculously high liver enzymes. I am a very health concious person--vegetarian, run about 25 miles a week, do yoga, drink lots of water, about 0-4 alcoholic drinks per week, no drugs, not a tylenol abuser or anything. My doctor quickly suspected the minocycline, and sure enough, once I stopped it, my enzymes were back to normal in three weeks. ****This is something I had never heard about (though I found some reports online after the fact)---MINOCYCLINE CAN BE TOXIC TO YOUR LIVER. I am not talking about "elevated levels" of liver enzymes. I am talking about levels at 4-7 times the MAXIMUM limit.

At that point, I knew accutane was the only option left. So after a few months of making sure my liver was back in shape, I dove in. Did the iPledge, the blood work, the waiting. Did TONS of reading online from all my fellow acne sufferers.

Finally, I got my prescription. Now, I will say that my derm prescribed me 80mg a day (40mg, 2x daily) and there was no way I was going to start with that. Based on everything I have read, from other patients and from the medical literature, I think 80mg is too much for me to start with, and possibly too much to ever take daily. I weigh 130 pounds, so according to my calculations, I should be at 30-60mg a day.

When I started, my skin was pretty clear to begin with. As I said, my issue is these massive, occasional cysts, not typical "acne" (which my son has in spades, I'm afraid). After the first 3 days, I thought my skin looked really good. Better already. Clearer. Smoother. Had some dry lips, but the rest of my face actually was much less dry than with the Retin-A (topical), which made it flake if I wasn't careful. I thought I might actually avoid the dreaded Initial Breakout (ha, ha, ha) because by Day 10, I was clear.

But then. I developed a cyst on my cheek. A few pimples on my nose. Not too bad. Then two, then a third, small cysts on my chin. These three went away pretty quickly. The cheek one persisted, but it wasn't bad. But at 14 days, I all of a sudden had a massive cyst on my jawline, half way between my chin and my ear. A place I NEVER have broken out. Then, three smaller (very minor) cysts right above that. The cyst on my jaw is still there and hearty ---it looks like a massive mosquito bite, very red, very large, very obvious.

But to be clear, I am not really complaining about the outbreaks. They are expected and nothing ridiculous (so far!).

I just took my 21st pill and the break out and the ludicrously (but again, expected) dry lips are all I can really say is even noteworthy in terms of negatives. I am thirstier than normal (and I am already a big water drinker) and for the first week or so I had a pretty spacey-brain stint of an hour or two every afternoon (I'm taking my pill with breakfast).

I am doing as much as I can to pre-empt any issues I can prevent. Mostly, I am just doing basic good living:

Drinking lots of water.

Exercising (I was very worried about not being able to keep up with my routines because of aches and joints, but so far, so good)

Getting enough sleep.

Eating well (lots of fruits and veggies).

I am also taking some supplements:

Glucosamine/Chondriotin/MSM (not sure I spelled 'em correctly, but these are hopefully preventing some of the joint aches I want to avoid)

Omega oil blend (for general dryness everywhere, also to support absorption of everything else)

B-vitamins (I am a strict vegetarian, so I take this anyway)

Lutein (supposed to be good for skin and nails)

Milk thistle (supposed to be good for your liver)

Vitamin C (immune support)

*Also, like everyone says---keep that lip-stuff with you ALWAYS (even next to your bed). I like Burt's Bees--they have some natural products, but I admit I have an arsenal of all kinds of stuff going. Jojoba oil, bio-oil, vitamin e oil, vaseline, aquaphor. For my face I have been using La Roche Posay products for moisture and a dab of tea-tree oil cream for the breakouts, and again, so far, so good.

I wasn't planning for this to be so long, but I did want to put in my two cents thus far. Based on my (brief) experience at this point, I would say I am really happy with how it's going. My lips are peeling off, cracking, blistering, bleeding a bit at times. Some dryness in my nose and on my face (a damp washcloth rubs the peeling off). Thirsty. The spaciness has passed. The IB is what it is. Keeping my fingers crossed about the rest.

Hopefully I will come back in a few weeks with more positive reports. Thank you to everyone who has posted on these boards. I know it was so important for me to hear from real people about what they were going (or had gone) through. I'd love to hear more from anyone. Thanks.

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Glad to see It's going good so far. I would like to start a course....appointment is now on the 9th, but still terrified about hair loss. I think that is rare though, and I'm also female...perhaps I'll cope. I guess growing my hair out was a better idea.

Edited by Mahweeoh

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Ouch. Sorry about that IB. I hate cysts with a passion. Accutane is way worth it though.

80mg does seem high. I've seen others on here start that high but I also hear that makes the IB worse.

I used to be vegan/strict vegetarian too ;D I plan to go back after Accutane so hopefully through health living I can prevent future breakouts. Never took B vitamins though when I was. Make sure some of your supplements aren't possibly breaking you out. I don't know much about that stuff but I've heard before that some supplements can break you out.

The supplements for your joints are awesome! I had horrible back/knee pain on my 4th month and after I started taking supplements for it that really helped. It took a while though to start working but it is good you started taking them at the beginning.

Good luck. I'm already on my 5th (and possibly last) month. All clear except for a pimple here and there. No more cysts though.

Glad to see It's going good so far. I would like to start a course....appointment is now on the 9th, but still terrified about hair loss. I think that is rare though, and I'm also female...perhaps I'll cope. I guess growing my hair out was a better idea.

I'm on a pretty high dose for my weight and I have had no hair loss. Don't let that be what stops you :) My hair is pretty damn dry though. I can go quite a few days without washing it and it is still dry, lol. Nothing falling out though. Still thick as ever.

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I am concerned about the hair loss issue, too. My hair is already pretty fine and not lush. I have been meaning to invest in some Nioxin, but haven't gotten it yet. I've read that might help.

Good luck to you! I was as scared and resistant as anyone to start the med, but so far I am really glad I did. It's not fun, but so far it's not a nightmare either. More of a manageable twinge (not a pain, yet) in the rear.

Thanks for the tip about supplements being a possible trigger for breakouts, Alexis. I'll look into that.

So glad to hear your positive attitude and comments. Thanks!

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Hey, thanks for posting. I wish I can give you better advice but I am in the same situation as you are. Hopefully, these next few months go bu fast so that I can get rid of this horrible cystic acne once and for all. I am a bit encouraged by others who have completed the course.

I am on 30 mg dose for the first month. So my side effects aren't so terrible. I just have the dry lips and the 6 huge cysts. But my skin isn't so dry.

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Ok well, I'm going to give it a go. Thanks for the info on hair! I am a tiny 93 lbs now ( was 91, trying to gain my weight back ). :P

But I think the way my acne patterns and causes scarring ( it seems to march in straight or curved lines of, dot dot dot dot ) it's very odd how symmetrical it is, and seems to think it's hilarious so cover the same spot that already had a mark on it. So occasionally I'm seeing a moon-shaped scar, I guess that's called a scar because it looks like a pock mark, but it's very small thankfully...but it's starting to do that to my skin. I want to prevent it from worsening, and also the red marks are very bad.I don't get why it patterns the way it does, but it's definitely the same acne I've had forever. And I'd never seen a blackhead in my life...until I started my early 20's. When the blackhead does come out it looks like a black-tipped missile of death.

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I am starting my second 30 days now, and things are still going pretty much the same. The dryness has gotten worse (yesterday I spent 5 minutes in front of the mirror peeling and, gently of course, scrubbing the flakes off my lips, drove to the store and by the time I was there my son was laughing at the way my lips looked exactly as bad as they had before my scrubbing--flaking off again 10 minutes later.)....I find applying lots of jojoba oil, mosturizer, and vitamin E oil is helping. Also, the sun sensitivity is no joke. I thoroughly sun-screened myself before a run the other day and must have missed the edge where my shirt hits my chest, because I ended up with 2 burns right along it. And by burns, I don't mean a typical sunburn---it looks (and feels) like the kind of burn you get when you bump against a hot pan from the oven. Ouch.

Other than that, all the same thus far. Started taking 80mg every other day (alternating with 40mg)--too soon to see if that shakes things up a lot.

Hope ALL of you are making good progress and feeling WELL and HAPPY.

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I'm wondering if other people have experienced a cough from accutane treatment? A few weeks ago I developed this kind of dry cough, and it's persisted without change. My throat is kind of raspy (finally, that sexy voice I've always wanted, right!?) and I sound hoarse. I thought it might just be an allergy thing or something, but it's not going away. Related to that, I also started taking 80mg every other day (alternating with 40mg) and I started getting really uncomfortable chest pains---it kind of went with my cough, but like a squeezing pressure and harder than normal to breathe or take a deep breath. That happened three of the days, so I just quit with the alternating and am back to 40, which seems to keep the side effects down.

Another question for you all--

any one having weird dreams or anxiety with the meds? Numerous times now, I have had near to impossible sleep all night because of anxiousness--it's close to a panic feeling, fast heartbeat, shallow breath, slightly clammy, really scared (about all kinds of real but random things). None of this is normal for me even occasionally--much less several times a week. Sound familiar to anyone?

Thanks for all of your words, and eyes, and sharing.

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Hi! Thanks for sharing your experience! I am 37 and at a point where I feel like I've tried everything short of accutane. I was actually prescribed accutane last year, but then found out my insurance wouldn't cover it, so I was looking at about $500/mo out of pocket, so I never went through with it. Here I am, though, a year later- still covered in an assortment of zits- cysts, blackheads, whiteheads, itchy rash-like zits- face, neck,chest, and back. I'm thinking about going back to the derm to try it again- I think of accutane as a last ditch effort, but I feel like I'm ready for it.

I'll be following to see how your treatment goes! Good luck!

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