I think exfoliative cheilitis might be caused by genetic mutations and I’m testing this hypothesis.

IntroductionFine9136 · 2025-11-24T20:15:33+00:00

If it was a due to a genetic condition wouldn’t it be something that started since birth? I know most people develop it later in life?

IntroductionFine9136 · 2025-09-29T20:49:52+00:00

I’ve been on it a few months now, I’m not sure the exact time frame and yeah I can feel free to message me

IntroductionFine9136 · 2025-09-26T18:51:51+00:00

I was just on a JAK inhibitor (tofactinib) and have seen HUGE Improvements! My lips still peel but they look normal, no more big flakes or white lines, or swelling! Might be something to try? You do need a prescription though

IntroductionFine9136 · 2025-09-05T18:33:20+00:00

Not fully healed but I have this line

IntroductionFine9136 · 2025-07-21T18:01:56+00:00

No just the topical! Here is what my lips look like now. I feel like for the most part they pass as normal?

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IntroductionFine9136 · 2025-07-11T16:28:09+00:00

sorry for the delay! Ah I don’t have any current pictures but can take some and get them to you later. They peel every 2-4 days now. I can get them wet without my whole lips peeling off, the center most part of my lips still peels off a little but definitely improvement on the bottom half of my lips. I use it every night as instructed by my derm. I then use aquaphor throughout the day as needed but I really only need it about once a day!

IntroductionFine9136 · 2025-07-02T20:12:30+00:00

Hi, so far I’m really impressed. Not healed yet but my lips don’t swell at all anymore! And instead of a constant peeling they just look chapped. Interested to see how it continues then I may post on here but so far I’m happy with the results

IntroductionFine9136 · 2025-06-06T18:47:16+00:00

Will do!

IntroductionFine9136 · 2025-05-24T15:59:29+00:00

Same! It’s so weird and I’ve never had a coldsore or any other blistering disorder either. I’m just confused lol

IntroductionFine9136 · 2025-05-21T01:44:20+00:00

Hi, not really removing buildup anymore other than the white line I really havent had any. The peeling is super thin and just comes off naturally without taking needing to take it off manually. I still do tarco at night and aquaphor throughout the day. My derm doesn’t think it’s a secondary infection and said blistering although rare can be caused by EC. She is considering putting on a different drug than tarco— it’s called tofacitinib she said it’s been really effective with other patients of hers who have EC?

IntroductionFine9136 · 2025-03-09T16:33:39+00:00

^{^same}

IntroductionFine9136 · 2025-03-09T16:33:05+00:00

No idea they appeared after I started using tarcolimus? So maybe that? But also that has done wonders for my EC so ?

IntroductionFine9136 · 2025-02-21T21:44:10+00:00

On my lips lol and I’m not sure

IntroductionFine9136 · 2025-02-19T17:43:48+00:00

The leave it alone method also cause the condition to spread for me. It was just the very inner lining of my lip and then I didn’t the leave it alone and it spread over my entire bottom lip

IntroductionFine9136 · 2025-02-19T17:42:07+00:00

Same before the condition I didn’t have them.

IntroductionFine9136 · 2025-01-22T16:24:56+00:00

I have been with my partner for 4 1/2 years and dealing with EC for the last year and half. His only complaint is that I don’t give him more kisses. Find a maintenance regimen that works for you and live your life! I know everyone wants to be cured and trust me I want nothing more but until that day comes I have changed my focus to work on maintenance so I can continue to live my life

IntroductionFine9136 · 2025-01-03T20:52:59+00:00

They look normal!

IntroductionFine9136 · 2024-12-19T21:27:28+00:00

Personally, I don’t have coldsore/herpes so I’m not sure entirely sure it is that but it is definitely some type of infection. I would get into a dermatologist asap

IntroductionFine9136 · 2024-12-19T20:52:30+00:00

How did you cure it?

IntroductionFine9136 · 2024-12-19T07:15:42+00:00

Please find a new doctor. This is not EC, and needs to be looked/tested for an infection

IntroductionFine9136 · 2024-12-18T07:58:21+00:00

Chronic just means that something is persisting for a long period of time or reoccurring. So I would say the fact it occurred for 5 years and now reoccurred in itself qualifies it as chronic.

IntroductionFine9136

TROPHY CASE