Grover168

Red, Chapped and Irritated Lips - Post Accutane

10 posts in this topic

Hi All,

I finished accutane four years ago.  My skin has greatly improved, but my lips have never recovered.

Like most people, my lips were very chapped during my accutane treatment.  After I I got off the medication, my lips stopped peeling, but never healed.  In many ways, they have continued to grow worse in the years since.

My lips usually have a mild burning sensation.  They always looks and feel very chapped.  They turn red or white when I drink anything.  I often have a red ring or line around my mouth.

My doctor has tested me for allergies and various diseases with no success.  He came to the same conclusion that I did - my lips have have been ruined my accutane.

I have tried lots of things including:
-every lip balm/chapstick under the sun
- all natural toothpastes
- vasaline
- aquaphor
- vitamin b
- L-lysine
- lip repair creams
- I try to remain indoors as much as possible and I NEVER lick my lips.

Nothing has helped.  Anyone else out there experienced this kind of post-accutane problem?

 

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there are a few stories I have read that their lips never healed after Accutane, but they had severe Chelitis that they couldn't drink out of a straw, kiss or eat at times and had to remain inside at times.  

Have you tried this......I saw this postGood Luck

The secret of health for both mind & body

is not to mourn for the past, not to worry about the future, or not anticipate troubles, but to live the present moment wisely and earnestly.

The Buddha


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This is an old post but I too an suffering the same issue, and it's quite frankly as depressing as the acne!
It's been about 5 months and my lips are almost as bad as when I was on the meds. Constant redness around the rims; peeling, flaking, intense feeling of dryness and irritation.

Like Grover I'm starting to exhaust all solutions. I'm booked in for a patch test in a couple of weeks but I can't help feeling they have just been permanently destroyed.

Would love to hear if any fellow sufferers found an alternative ... I was certain at one point that it was some kind of fungal issue but the standard antifungal creams have done nothing.
The doc gave me a different steroid to try last week (emovate cream) but as of yet it's as ineffective as hydrocortisone.

I would love to leave the house without worrying about my god damn lips ...  I sometimes use concealer and a lip liner to put the natural edges back in (I'm a girl!) but after a couple of hours of wiping various balms over my lips it looks worse than when I started!

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Lozoroo,

I'm very sorry to hear about your lips! Your condition sounds very similar to mine. It's a pretty sucky problem to have!

I'm still searching for a cure.  I wish I had some advice to offer you.

The conclusion that I've come to is that my lips are suffering from chronic inflammation.  They do seem to get worse after I eat. I'm still hopeful that there is some kind of allergic reaction occurring and that by eliminating it from my diet my lips will improve.

Lately the two things I've been using are coconut oil (to reduce inflammation) and bag balm (to hydrate). I'ts the best combo I've found, but still not great.

I'm going to see another Doctor next week and I'll let you know if I find anything new.

PLEASE if you find something that helps, let me know. Thanks :)

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Try Hi-dose Riboflavin 5 phosphate  (vitamin B2)  and tell me how it goes.


If you have a majority of the following: Joint pain,Brain fog,lethargy,high bilirubin,dry skin, night-blindness, sweat easily, thin easily damaged skin, poor wound healing, dry brittle hair..... Please get a RBC copper, ceruloplasmin, plasma copper,  RBC zinc and a Vitamin D test ASAP


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Thanks for the advice TryingtoHelp!  Funny you would mention Riboflavin.  I actually started taking a B2 supplement last week!  So far no change, but I'm hopeful that I'll start seeing an improvement soon!

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must take the active form of riboflavin... R5P  riboflavin 5 phosphate.   take 10mg 3x a day

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If you have a majority of the following: Joint pain,Brain fog,lethargy,high bilirubin,dry skin, night-blindness, sweat easily, thin easily damaged skin, poor wound healing, dry brittle hair..... Please get a RBC copper, ceruloplasmin, plasma copper,  RBC zinc and a Vitamin D test ASAP


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Hi both,

I've been supplementing with b2 for the last month. Perhaps a little improvement but definitely nothing better than having a few more 'good days.'
Are you speaking from experience Tryingtohelp? I've never played much mind as to whether it's the active form ... just standard Swansons ... do you know what the difference is?

My combo of choice at the moment is shea butter and pure lanolin. I know I don't have an allergy to either due to an elimination exercise I did during my treatment. I'm currently avoiding anything and everything else including beeswax, petroleum and all makeup!

I have no allergen patch test booked in next week, and the derm currently has me on emovate ointment. He says it's a dermatitis and I need a stronger steroid to get it into remission, and to use it for longer than the standard 7 days.
Its been 3 weeks already ... whilst my lips feel in better shape in terms of peeling and dryness, I can't say the redness around them has drastically improved.

I was wondering Grover whether you would mind doing a photo swap? It would be useful (and comforting) to have a point of reference.

Much love 

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I'll have to give shea butter and pure lanolin a try.  I think you are smart for trying to eliminate potential allergens.

I have tried steroids before and they have helped slightly, but the redness and irritation always comes roaring back as soon as I stop. My doctor currently has me on an immuno suppressant called Methotraxate.  He calls it, "an internal steroid you can take for long-term treatment."  There are some side effects, but I have noticed a 20% improvement in appearance and a 50% reduction in lip pain. It's definitely not a cure though.

Another thing I hesitate to recommend because I have just started using it is Clinique's "All About Lips." It's a product clearly made for women, so I feel a little weird putting it on, but I've had good initial results.  It's not a lip balm.  I purchased it because it claims to be able to fill in deep lip lines and reduce redness in the mouth area. It's kind of like a lotion for the lips. I've used it 2 -4 times a day for the last four days. The first two days I didn't notice much difference.  However, the last two days have been the best my lips have seen in a long time. I've had virtually no burning sensation, my lips look a healthier pink color, no flaking and the redness around my mouth is barely noticeable. I've had false hope before though. I'll keep using and report back on how it goes.

Question for you, have you spent a lot time in the sun? I'm very fair skinned but I used to do a ton of outside spots and activities in 90+ degree weather. I wonder if sun damage exasperated my negative reaction from accutane. 

I'd love to trade lip pics. You are the first person I've met who may have the same condition as me. My old iphone5 doesn't have a very good camera. When I get home I'll take a picture with a digital camera and post it on here. Could you do the same? If you don't feel comfortable posting send me a private message through this site.

Good luck with the patch test!

Edited by Grover168

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14 hours ago, Grover168 said:

I'll have to give shea butter and pure lanolin a try.  I think you are smart for trying to eliminate potential allergens.

I have tried steroids before and they have helped slightly, but the redness and irritation always comes roaring back as soon as I stop. My doctor currently has me on an immuno suppressant called Methotraxate.  He calls it, "an internal steroid you can take for long-term treatment."  There are some side effects, but I have noticed a 20% improvement in appearance and a 50% reduction in lip pain. It's definitely not a cure though.

Another thing I hesitate to recommend because I have just started using it is Clinique's "All About Lips." It's a product clearly made for women, so I feel a little weird putting it on, but I've had good initial results.  It's not a lip balm.  I purchased it because it claims to be able to fill in deep lip lines and reduce redness in the mouth area. It's kind of like a lotion for the lips. I've used it 2 -4 times a day for the last four days. The first two days I didn't notice much difference.  However, the last two days have been the best my lips have seen in a long time. I've had virtually no burning sensation, my lips look a healthier pink color, no flaking and the redness around my mouth is barely noticeable. I've had false hope before though. I'll keep using and report back on how it goes.

Question for you, have you spent a lot time in the sun? I'm very fair skinned but I used to do a ton of outside spots and activities in 90+ degree weather. I wonder if sun damage exasperated my negative reaction from accutane. 

I'd love to trade lip pics. You are the first person I've met who may have the same condition as me. My old iphone5 doesn't have a very good camera. When I get home I'll take a picture with a digital camera and post it on here. Could you do the same? If you don't feel comfortable posting send me a private message through this site.

Good luck with the patch test!

Hi Grover,

Rather than fill up this forum with an essay about my lip trials and tribulations, I think I'll send you a PM.

For anyone else following this, more than happy to share ... jut drop me a line and I'll bring it back into the public domain!

L

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