r/exfoliativecheilitis

Hello,

I wanted to share my experience with EC because I know how exasperating it can be and hopefully my solution will help someone. Let me start by saying that when I commented in other posts that I cured my EC using Tacrolimus 0.03% (specifically Protopic 0.03%) some people mentioned that mine "wasn't real EC" because they tried and didn't work for them. In any case, in my research I figured out there's different types of EC and severities but all of them share a cyclical peeling of the lip/s and skin buildup. I will share my story and pictures of how my lips looked so maybe others with similar looking EC and characteristics can heal using my method.

It all started last year around April. I got lip herpes on the right side of my lower lip supposedly from some water glass in an Airbnb. Never had lip herpes before. I visited a dermatologist and healed it using herpes creme but after that I saw that the area were the herpes had been continued peeling. This went on for 1 or 2 weeks. Then the peeling extended to the whole lower lip. From then on, hell started.

I went to a new dermatologist and she recommended using Aquaphor, and I tried it for months. It didn't work. Then I left my lip alone for maybe 1 or 2 more months, it also didn't work. I visited 2 or 3 more dermatologists. Some recommended continue using Aquaphor, and after a while, they recommended using Cicaplast. I used both (separately) for many months and they didn't work at all for me. One time a dermatologist told me to try Clotrimazol (an antifungal If I remember correctly), but it also didn't work.

My peeling cycle was like this: I would start getting skin (keratin?) build up on my lower lip for 2 days or so, then the lip would start to feel tight and peel or crack. Sometimes the cracks would bleed. Then the lips would peel for 2 or so more days. Then after complete peeling my lips would look fine (but red/inflamed) for 1 or 2 more days. Then the skin buildup would start again. Repeat forever. In my worst times the cycle would happen 2 or 3 times per week.

Around beginning of May this year I went again to one of the dermatologists. This was around the time my upper lip started peeling in a spot (you can see in some pictures). Kinda like EC had extended to my upper lip. We decided to try a steroid creme. I tried it for 2 weeks but didn't work for me. She then told me it might be time to take a biopsy. However I asked if we could finally try Tacrolimus which I read worked for many people. She agreed and prescribed it to me.

So, 1 month ago I started using Tacrolimus twice x day for 2 weeks. Around 2 days in, my lips looked already completely fine (no peeling, no inflamation). These last 2 weeks I have been using it once per day. Some of the last days I even forgot. My lips are almost completely healed I think.

I think it still might be a bit early to state that my lips are completely cured because I still apply Tacrolimus regularly once per day (when I don't forget), but for sure I am almost completely healed. I don't know if this will continue like this even after I completely stop using Tacrolimus, but what for sure I can say is that this worked for me.

In the next days I plan on stopping its use completely and see what happens.

Here you can see pictures of my lips with EC and a picture I took 5 minutes ago with the name Tacrolimus: https://drive.google.com/drive/folders/1_98X-0zDSnn087NKaCPAUKDvhpClqDFY?usp=drive_link

Was anyone confirmed to be deficient in vitamin b12 and D and healed by correcting them ?

i feel exhausted man even when i wake up with a good mood , happily going to brush my teeth but then i see myself in the mirror and my day is ruined totally those ugly lips thanks to this mf ec just ruining my days feeling so helpless my mother asks me why i am like this but how do i tell her that this mf condition is making me so insecure and there is no cure to it. i just dealt with some severe acne 2 years ago and now i have been dealing with this from last 2 years just when i gained some confidence in my appearance this mf came into my life and ruined it all , please share ur advices and if anyone has seen some great results please tell me how cause i dont wanna tolerate this mf anymore i am going to college this spring its my first year i dont want to feel insecure throughout my college life as well.

I had this problem from 6 months ago after vitamin b supplements and now it's 4 months I stopped the supplement there is no change for my lips I removed all possible allergens diet myself and no change I used tacrilimous after 3 weeks I got allergic to that I'm really hopeless I don't want to live anymore I'm trying to gift my body organs to people who need to live

I’ve seen a lot of discussion around topical treatments, lip picking, fungal/bacterial causes, etc., but I’m curious about two things specifically:

Consistent, high-quality sleep
Not just sleeping more, but going to bed and waking up at roughly the same time every day. Did anyone notice reduced peeling, inflammation, crusting, or faster healing after improving sleep habits?

Gut health / microbiome changes
Has anyone seen improvement after working on their gut health? Things like:

Eliminating foods you were allergic or sensitive to

Treating digestive issues

Improving diet quality

Taking probiotics or other microbiome-focused approaches

If so:

What changes did you make?

How long did it take before you noticed a difference?

Was the improvement minor or significant?

I’m trying to figure out whether these factors genuinely helped people with EC or if they’re mostly theories that get repeated online.

Would love to hear real experiences, positive or negative.

Like the lips giving looks of pigmentation or hyperpigmentation.

So i started using tacrolimus 0.03 percent 5 days ago I use it once in the morning and once in the night and it's the first time in my last 2 years where I don't see any peeling or dead soggy white skin build up on my lips on day 5th of my peeling cycle ( specially after a bath ) well ik it's too early to say anything but I will update u guys again after 2 weeks , kind of happy though . I am changing my sleeping habit too like I used to sleep on my stomach now I am trying to sleep on my back forcefully.

If I leave the dead skin for 2 weeks it's never wipeable, it just becomes thicker and yellow the dead skin.

Is it because others are using moisturiser, which makes it more moist and soggy ? I don't use moisturiser, but ointments.

If it wanted to wipe with a cotton bud or pad it wouldn't work really I'd have to scrub hard, unless I'm doing it improperly. (Using a cotton pad after a shower). Maybe i need to leave the cotton pad on top for long and then wipe hard

Considering how lonely this condition is and how difficult for other people to understand what it does to someone, I just thought I would check in on with the community here.
How is your EC today? How are you managing it? What are you not managing about it and are frustrated about?

Is it ok for tacrolimus to sting a little specially in the first 2,3 days on raw skin .

I swear if I didn’t have EC I would be outside 24/7 having fun and meeting new people. Out of everyone why me.😔 Let’s say out of 100,000 people I got picked to have this weird ass disease that’s how lonely and rare it feels.

Hi everyone!

Today I got the results of a swab test from my lip, and it turns out Candida was found. My dermatologist did say we still don’t know for sure if that’s actually the cause of my persistent exfoliative cheilitis. Apparently a lot of people carry Candida anyway (I didn’t know that).

Does anyone here have experience with this? My dermatologist says I should soak the crusts off my lips and then apply antifungal cream, and I’ll also be taking pills against the Candida. My lips look pretty severe right now, but I probably could remove the crusts.

What do you guys think is the best thing to do? Putting antifungal cream on top of the crusts doesn’t seem very effective to me either.

How long did you use it with this frequency?

What did your dermatologist say about the length of safe use? How did you taper off?