If this message is never read, I am sorry, this website is pure garbage and I cannot tell what the hell is going on, but this intended to be a post to the EC forum. The reason there is no pictures is because this website is incomprehensible so my descriptions will have to suffice.
I am a 19 year old male who has had Exfoliative Cheilitis for 8 months or so. I've been to 1 doctor and 2 dermatologists all of whom prescribed things that didn't work to cure or even treat the condition. In brief I was prescribed; Triamcinlone steroids, Potassium Valerate steroids, hydrocortisone steroids (generic), Elidel Immunosuppressant cream, Acortin A cream, H+ moisturizing cream, and I tried all the other crap; I.E. the liver cleanse, theSLS free, the aquaphor, the Lanolin ect... Nothing permantely cured me.
Upon careful examination of past photos it turns out that the small bit in my upper lip had been peeling for my whole life and I had been ripping it off consciously or subconsciously my whole life. However, at one point I began to realize that the chunks of skin I was ripping off were not thin and clear/white but were thick and yellow. My dentist told me that there was a scar forming on my upper lip and that I should use chaptsick on it for a week or so to heal it. Wanting to impress a girl I did as instructed. However after a week nothing happened and I wasn't too bothered by it so I stopped. However, then a small piece on my lower lip began to flake, my natural reaction was to peel it off as I had been doing for so long, but when I did this it peeled nearly my whole bottom lip off and left a damaged bit of tissue and left me with chapped lips that would split when I sneezed. So I used aquaphor and coconut oil to heal the splits and in one or two days my lips were whole and normal again. However it was then that I began to realize that skin would build up, atop seemingly healthy skin, die and slough off in large orange and yellow chunks. This continued for some months before I realized I had a problem, and it was then that I found this dreaded condition on this website and began undertaking the various cures, all of which were unsuccessful.
My story gets interesting when I tell you what variable I neglected. For three years prior to this dreadful event I had been taking Fluoxetine, Welbutrin, and Strattera for a MDD, and about 4 months before this occured I had quit cold turkey because I felt great. This is not how one is supposed to get off of these medications, it is supposed to be done through tapering. I got off also in part because of the dangerous side effects of these drugs, and I was very stubbornly against going back on them. But when this condition gave me daily thoughts of suicide I felt I had to go back and within 20 days of being on 20mg Prozac (fluoxetine) the excessive skin production resulting in large yellow chunks had ceased. (it should also be noted that I went all the way up to 40mg which I had originally been on and the peeling got less visible as my dosage increased.)
Do not misunderstand me, the condition continues today, but much in the same way as it was for the whole of my life before the EC hit badly where it was just on my upper lip. It peels but much more slowly and much less visibly with clear pieces that fragment looking much more like chapped lips. However, this, I believe, is because I damaged the skin in the areas that still peel. When I tried the lanolin treatment a bunch of healthy skin was ripped off and damaged my tissue leaving a lower layer of the dermis exposed and it is this layer that cannot heal properly and dries and peels (but the skin is not being produced in excess anymore). I have reason to believe that if youre skin underneath is healthy and skin just randomly builds up overtop of it into chunks that this will be the cure for you. If you have ripped off the skin and have damaged skin beneath then this will only greatly minimize your condition and not fully cure you, but fear not fellow sufferers, I will not stop until I am totally cured, and I will electrocauterize my lips if I feel there's a chance of it working and I will return one day to post that I am fully healed.
If this doesn't work for you, I am truly sorry, and I feel for you, I know how awful false hope of a cure is and would not wish that pain on anyone, but give it a try and I am sure you will see improvement.
Much Love,
- Rajin
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