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!

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

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

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!

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

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

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!

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

I know this is an old forum but I am having similar issues with my lips as well. I was on Accutane for a few years and had very chapped lips. Once getting off of it, my lips never went back to normal. I have a permanent, thin, red ring around my lips that I cannot get rid of for the life of me. No doctors can seem to find what is wrong and how to fix it. Please let me know if either of you have found solutions on how to curethis!

Thank you!!

Hi Emma

Sadly this is still an issue for me after almost three years.

Currently seeing a private dermatologist but am starting to resound myself to the fact that this is a permanent condition for me.

Patch tests are unhelpful, steroids etc do nothing. My lips were so sensitive whilst on isotretinoin that Ive concurred Ive caused lasting damage.

i wonder whether the redness is more hyperpigmentation than inflammation, but who knows.

My current derm seems to think it could be a UV issue.

Would you like to share photos to see if were dealing with the same issue?

Loz

I am having the same issue - it started when I forgot that I shouldnt have gotten lip waxed while on accutane. It has been a painful battle since. I have a red ring that flares up and burns every few days. Is there any hope?

Same problem. Anybody find a solution?

Sadly not. Much less irritation and chapping but still a red glow around the edges.

These days I try and use concealer and stop depressing myself looking for solutions.

I figured. Doesn't look like anybody ever found a solution, or even a doctor who will admit it was from Accutane.

Suicide it is.

Thanks

Hey guys!

Mine is getting better. I did try to kill myself but failed. Anyway!

It just sort of randomly happened. Over the past few weeks I had noticed it's worst wasn't as bad as it used to be. I still had the swelling and redness below my lower lip, but it didn't seem to get as red, or for as long. Today though I woke up and the right side of my lip is back to normal! The left side isn't 100% back but it's definitely improved. I haven't seen my own face in over a year, and I almost have it back!

I don't know what helped, but here's what I have been doing. I started the AIP diet in case it was an autoimmune issue. I've been on that for about 3 weeks. As for putting things on my lips, just alternating between VEA Lipogel and a homemade balm. The homemade balm is 50% shea butter, 50% soy wax. I also added in a bit of Aloe and Vitamin E.

If I had to guess I'd say it's the AIP that's helping. It sucks being on it though, but I also haven't been very strict about it so maybe even a little bit of clean eating can help. I also made bone broth twice, so maybe that is a factor.

Anyway, this is all easy and cheap stuff to give a try, so I figure you may as well. If it gets 100% better I will come back and tell you all.

Improvement seems to have stalled a bit, but I'm still at a far more acceptable place than I was a month ago. Besides visually, they also seem to be less sensitive and chapped. I don't think I've woken up with dead skin on them yet this week.

I understand exactly what some of you guys are going through. Id like to try help you all with my experience and with Acne, steroid injections also i will explain the short term and what seems life long effects i am left with due to Accutane. Also some simple science to add to this which was explained by a specialist doctor which costed alot of money.

I suffered from cystic acne, if anyone knows its ahorrible experience. The problem i just could not understand was the size of them, the ones on my nose honestly sometimes i used to just laugh thinking how could my body product something that big. The issue also is as they develop you feel them throbbing and pulsing, it is just a horrible experience. After many failed attempts with topical creams i my parents booked me in to see specialist Acne doctor which was not cheap.

Steroid injections - On my first visit to a specialist i was instantly recommended taking Accutane, also recommended having regular blood tests whilst on this medication. At the time i had a huge cystic spot on my nose which kept re-developing for around 2-3 months so the doctor used a steroid injection on my nose. It worked wonders, the next day it was 50% of the size and within a week it was gone. The problem however is to this day i have it it has left scar tissue, slightly raised bump n my nose. My advise is if you get this injection make sure you speak to the doctor to get advise on the whereabouts to make sure you dont get a permeanet tissue scar. Its very visible ans make your nose look lumpy. The only way to get rid of this scar tissue is surgery.

Accutane Short term effects - . At first i felt as if i was getting few more pimples but i was explained that this is caused by roots dyeing and releasing the waste of the pimple bacteria which will of course come to the surface of the skin. However after 3/4 months the issue was solved, lips and skin was very very dry and in my experience Carmex is the ONLY suitable. I cant stress enough how well Carmex works over every other option.=

Accutane long term effects- 12 years later the cystic Acne comes very rarely. Maybe 1/2 times a year which i just have learnt to live with now. However dry lips have been permanent. I went back to the specialist doctor and he explained that during the course of Accutane, i lost the top layer of skin which is called the epidermis. This is the waterproof barrier which locks in moisture in your lips. The chronic dryness which i had suffered from specially on my lips had caused the epidermis on my lips to slowly degenerate to the point it no longer is there. Once you lose this there is a reduction in the amount of oxygen circulating to your lips. The formation of the eperdermis on the lip contains Keratinprotein which is quite a tough layer, once you lose this yours lips are exposed and even sun damage is also something that is pretty much multiplied. The lip is able to function but forever it will be dry and problematic. The reason Carmex is so good is it acts as a temporary waterproof barrier. There is no point using JUST amoisturizing cream as your lip will absorb this all in and dry up rapidly, you then need Carmex which acts as a temp sealant as it locks in themoisture which helps your lip cells follow normal roles. In myopinion Carmex is all you need. Another one which works well is OKeefe's Lip repair. Things like Vaseline are a waste of time trust me. The drying feels almost inflamed at times and i do sometimes just have bad days.

The conclusion is as much as i hate to say it, get used to it. Drinking 3-4 liters of water a day will not work, no diet plan will help, supplements will not work. For the last 7/8 years i have had an ongoing case with the doctors/hospital/specialists to try solve this issue. I just keep the case open hoping one day there is a something that can be done. I have also been to a specialist in Dubai/Turkey/USA and when i explained my situation hey all told me in the politest way that just get used it. As am typing this out i can feel my lips drying out, its just horrible.

I am generally quite a strong minded person so i just accept it. As a guy my friends sometimes laugh at me as I'm know as Mr Carmex, mid conversations I'm the only person that will just have to pull it out to apply it. I keep multiple Camrex sticks in jacket pockets, gym bag, car, bedside table. I buy them in box's. They do last really long but i just am so relient on them. Sometimes i feel anxious so i pretend i need to go toilet and apply it. This is life now.

I know 5 people who have had Accutaneand out of the 5, 1 of them has the same problem as me.

Going forward as the next option i am slowly exploring isnow looking into which could take place in Dubai is restoring the Eperdemis via a skin graft, in all fairness i probably wont go ahead with it but it was explained to me in confidence. The whole issue with this is the lip is very delicate and more damage and sife effects are likely. I hope someday there is an easy cure!

Maybe for you this is all the case. However, mine has improved dramatically to the point where I don't even have skin flaking off it anymore. If something on my lip was permanently destroyed it wouldn't be able to improve as much as it has. Or in keeping with what you are saying, perhaps something is permanently destroyed but the changes I have made have decreased the impact of that.

I can still see the inflammation on my inner lips when I lookin a mirror in natural sunlight so I know I haven't cured myself, but I absolutely have made it to a place where it doesn't run my life anymore. I wonder if we could get rid of the inflammation would our lip be able to heal itself?

On 3/28/2017 at 2:45 PM, 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!

Has your lips healed, I am dealing with the same issue

Im recovered. It took a loooong time. Still slightly dry, but I now moisturise at night only, and more of a preventative.

Idlove to impart some wisdom. But I think the real cure was time, alongside leaving them alone. Paradoxically when I cut back in the balm they started fighting for themselves.

Give it a try. Nothing drastic. Just cut down.

My thoughts are with anyone who is still dealing with this cruel side effect.

x

Thanks for coming back and sharing, Lozoroo.

I'm about a week into leaving mine alone myself. The dead skin hanging off them is less than pleasant, but there sure is less irritation (especially around the edges of my mouth) which lead me to your same paradoxical conclusion. It's kind of gross how multi-colored they are when you've got the redness of the cracks, the paleness of the dead skin, and whatever else. However, nothing ever bothered me as much as the redness surrounding my lower lip so I guess it's preferable overall.

It's funny, they don't even really get that bad without using balm. They don't hurt more or crack more, or anything really. Just the neverending peeling with the inflammation underneath, but that happens no matter how much shit I put on them anyway.

I'm glad you're better! I could sure as hell live with "slightly dry" after this endless nightmare.

Hey people who see this in the future.

Lozoroo is right, not fucking with it does seem to help. Mine's been gradually improving as well, and I haven't used lip balm in forever.

I noticed when investigating exfoliative cheilitis that there's tons of overlap between us and them. Many of them also used Accutane. I'd say we all have exfoliative cheilitis, to varying degrees. It took me a long time to make this link because when you Google it you tend to find extreme cases, while ours are all quite mild.

Thing is, if you leave it alone for awhile, you'll likely notice that it's little more than a constant peeling cycle. My lips don't hurt unless I peel off the flakes. They're barely inflamed unless I irritate them with food.

I'm off work now so I gotta go, but I'll come back and elaborate a bit later.

Hey thats great news!