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glittergirl

serious lip problems on accutane

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I’m starting to get really worried about my lips. I’m on accutane 12 weeks now (first 6 on 20mg a day and last 6 on 40mg a day).

Anyway apart from the usual dryness thing, I’ve noticed a few large white lumpy areas just inside my lips in my mouth. There are also a couple of small painful blister type lumps under the skin on my bottom lip, and when i brush my teeth a lot of the skin on my lips peels off. Is all of this normal and to be expected? I can hardly even kiss my boyfriend, it’s so uncomfortable, makes my lips too dry and the friction causes the skin on my upper lip / chin to go really red and sore! Anyone got any similar experiences or advice on what to do? Should I even mention all this to my derm tomorrow or do you think he’ll take me off it for these reasons! Any advice would be much appreciated

GG

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Well I have only been on accutane two weeks but I will tell you my CortiBalm is working like a miracle... I use it all day long and make sure it's always applied but my lips have not chapped, peeled or anything - they look great! I do notice when I kiss my significant other if I don't apply within an hour afterwards they will start to get dry, but they don't chap! Check it out at www.cortibalm.com you can read about an accutane user who had similar problems as you... it's designed specifically for accutane!

Hope this helps. Best of luck to you... How is your skin looking/feeling after 12 weeks? bb_question.gif

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my lips haven't actually chapped or split really, it's just like the outer layers are coming off making them very sensitive and sore. i've been using blistex since i started and it is also excellent. it's the little lumps im worried about most! and also i just want reassurance that my lips can be this sensitive and then heal properly after stopping roaccutane, like i'd stop it no if i thought my lips would stay like this forever .. arghhhh

i'll check out the cortibalm website, thanks for that.

my skin is defo looking way better, still a while to go but it's getting there. it's also such a novelty to have normal skin that doesn't look like an oil slick, i'm thrilled about that heheh.

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Sounds like Canker sores or a possible Thrush infection starting up. Have you recently started/Stopped an oral antibiotic? . Consult your doctor concerning Candida Albicans...AKA YEAST!

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glitter i'm not trying to burst your bubble or discourage you; however, there is a serious side-effect of accutane called cheilitis. Your symptoms may or may not fit the description, but I would definately research it if i were you. I hear petroleum jelly is good for it (but that's typically what's used on smaller children who will have it temporarily). You describe a white hue that is on your lips? People with cheilitis have this. However, you say it's on the inside of your lips so I get the feeling it's just skin that has exfoliated and has been wet. Does it scrape off?

You can go to RAGFORUM.COM and post your symptoms and ask the cheiltis users there if that's what happened to them. Also check with your derm.

pics of cheilitis:

user posted image

this isn't very severe. it looks like the first stages of cheilitis

user posted image

severe

user posted image

Definately get that checked out. How long has this been persistent for? Like I said, I'm not trying to discourage you but rather help you. I'm a pro-accutane person, as it worked wonders for me. But this disease is permanent if you get it. And if you really do think it's just chapped lips I'd recommend getting the MEDICATED BLISTEX (comes in white tube). If you read the labels on other chapsticks they only prevent, not heal chapped lips. Can try Aquaphor for lips too.

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"Exfoliative cheilitis is where the lips swell, crack and peel, are usually painful and are very prone to infection.

Post-Roaccutane the lips are also very dry and peel constantly. The people I know who have it as a result of Roaccutane often find it painful to speak or laugh, and cannot let anything touch the lips because the skin falls off in layers - that includes spoons, cups, toothbrushes etc.

In my son's case he was just coming to the end of his course of Roaccutane three-a-half years ago as his lips began to swell and peel and they have not recovered. Others have reported cheilitis that is beyond the dry lips they would expect from Roaccutane, starting months after the drug was finished. "

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"cheilitis affects 80-90% of patients treated with isotretinoin. Accordingly, bland emollients such as petrolatum, lanolin, and chapsticks are routinely recommended for every patient but offer only mild and temporary relief (4,5). Concomitant administration of vitamin E has been shown not to be effective in decreasing mucocutaneous side effects associated with isotretinoin therapy (6).

Recently we have observed great improvement in isotretinoin-associated cheilitis from the use of 5% dexpanthenol cream. The cream is applied to the lips, two to three times a day, preferentially after meals. Patients describing dryness of the nasal mucosa or epistaxis are instructed to apply the cream to this site as well. Areas of extremely dry and scaly skin can also be treated in the same way.

Objective and subjective improvement is generally noted following the first days of therapy, especially if compared to the use of different chapsticks and emollients. Scaling, dryness, and fissures of the lips, nasal mucosa, and skin dramatically improve, as do subjective symptoms of burning and pain.

We suggest that dexpanthenol cream is effective, safe, and has a high compliance rate when used in the management of mucocutaneous side effects during isotretinoin therapy."

That's from a doctor. Umm, I'm thinking he's talking about the typical dry skin that accutane users acquire as a side-effect. As he mentioned 80-90% of users have cheilitis. He must classifying chapped lips as a mild form of cheilitis, but obviously yours is worse -- possible exfoliative cheilitis. Just a lil FYI. Get on your research and talk to your doc. Like I said, you can also post a question on RagForum.com, just remember that forum is extremely biased.

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Use Aquaphor, I've had no problems with it and it's a healing ointment so it protects plus heals try it out I'm sure it will help.

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Hi Guys,

thanks for all the advice, i am seeing my derm this afternoon so will bring this up with him. I've read the Rag forum before “acnesuks� and seen the pictures of Jack who you refer to in your post, that is why I’m so worried, I want to make sure that I don’t get this exfoliative chelitis thing, so at the first sign of any symptoms I want to investigate, which is why I posted this topic. I don’t know if this is the start of that type of thing or just a normal part of accutane use, but I guess I’ll find out from my derm today.

I think it is just skin exfoliating off and stuff because it does scrape off, it’s just the tiny blistery lumps that really worry me, but visually my lips look fine to other people, they are thankfully no way like the pix you posted acne suks.

I’ve attached a pic of the guy you mention from the ragforum, this is what I definitely don’t want to happen. The picture seems huge, I hope it displays ok. If not you can go to this link

http://www.xsorbit1.com/users/davec/Attachment/JackJuly.jpg and download it and view it smaller and you can see the state of this guy’s lips, I feel so sorry for him. This is the one thing that has seriously made me consider giving up on accutane, but it’s a gamble you have to take really. I’ll let you know how I go with the derm, I’ll ask him too smoothbeamin if it might be a yeast infection, altho i havnt recently come off antibiotics or anything,

thanks so much for all your advice guys,

GG

user posted image

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i saw my derm yesterday and he didn't seem overly concerned about my lips, and just prescribed a hydrocortisone cream to apply to them.

but last night when i had dinner my lips got really bad, a couple of blisters appeared and they really stang and burned, has any else had these symptoms apart from the dryness and chapping,

thanks

GG

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im afraid i dont have a digital camera guys sad.gif so cant post a pic of my own lips, but the only visual indications that you can actually see are just that they are very red and sore looking and slightly swollen, but it's definitely not chelitis . not yet anyway!!!! they look nothing like the pix of the guys above, i wouldn't let them get even 1/2 as bad as that before stopping.

does anyone know if you can take a break from accutane for a week - would this give my lips a chance to recover a bit or would it upset my skin too much ... has anyone tried this or know if it's ok to do this??? thanx GG

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The key is to use a medicated lip ointment or conditioner and apply it at least every hour- every half hour if possible.

Also at night u need something much stronger because for 8 hours or whatever time u are sleeping your lips are not being mousiturised. So at night use a really rich mousturising cream (not a skin mousturiser)-I use something called Bepanthen which is produced by the same company that makes Tane).

The problem is if u do not constantly treat your lips they will get extremely chapped and dry and so u need to constantly be aware of them.

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I’m starting to get really worried about my lips. I’m on accutane 12 weeks now (first 6 on 20mg a day and last 6 on 40mg a day).

Anyway apart from the usual dryness thing, I’ve noticed a few large white lumpy areas just inside my lips in my mouth. There are also a couple of small painful blister type lumps under the skin on my bottom lip, and when i brush my teeth a lot of the skin on my lips peels off. Is all of this normal and to be expected? I can hardly even kiss my boyfriend, it’s so uncomfortable, makes my lips too dry and the friction causes the skin on my upper lip / chin to go really red and sore! Anyone got any similar experiences or advice on what to do? Should I even mention all this to my derm tomorrow or do you think he’ll take me off it for these reasons! Any advice would be much appreciated

GG

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Glitter girl,

How much do you weigh? Your dosage sounds pretty low to be worried about severe chelitis. I weight 138 and they put me on 40mg a day to start then 60mg a day. MY derm said that 40mg is the normal dosage for someone that weighs a 100pounds.

Are you sure you're not being overly sensitive and afraid of the side effects? I means, canker sores are really common, you knew you would get uncomfortable dry lips, and white spots could be a yeast infection (thrush). I really hope you start feeling better soon. Quite frankly i'm really scared now because I start accutane in a week.

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i ahve the feeling that the jackjuly picture is of a guy with chelitis, but hes applied some sort of ointment to his lips, theres no way they are always like that....

theres been something bothering me for awhile--

vaseline is 100% petroleum jelly, aquaphor is only like, 41% petroleum jelly, and ive got chapstick that is 43% + some sunscreen stuff...

is aquaphor really better than straight up vaseline?

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