Tacrolimus for Exfoliative Cheilitis; This Forsaken Condition Makes Life Not Good

I've been using tacrolimus for 1 month 2x daily.

I have been using the tacrolimus ointment for 1
month so far. I was told it could take maybe up to 1 year to work & would make my lips 95% better at best **** which is not a cure & i dont believe this tacrolimus ointment will make my
lips even 80% better. The performance, as usual, is very underwhelming.

This ointment works better than all other steroid ointments &'lip balms & natural balms like aloe beeswax vitamin E shea butter etc etc etc (clobetasol, triamcinolone, hydrocortisone ointments) however the exfoliative cheilitis problem is not being cured it's being temporarily masked / treated - & when i say temporarily I mean less than 15 hours. So if I apply ointment at 8am, I will see my lips start to revert around 10pm to their shitty exfoliative cheilitis ways. I have not stopped the tacrolimus but I imagine - just like the steroids - withon maybe 3-4 days the problem would return full force appearing as though i never tried a treatment. I will try this ointment for as long as my doctor says but I am not hopeful & i dont believe tacrolimus fixes anything.

I have experienced side effects like:

#1 additional smaller-sized Acne with somewhat abnormal pimples (more like pimples but shrunk to a smaler size that have small pus not cystic & there are MANY like 30+)

#2 inflamed hair follicles around lip line,

#3 the worst side effect being quite intense neck pain like occipital lobe area right where hairline ends on back of head

#4 burning lips to the degree of feeling like a literal burn; it feels like my lips are in a constant state of sun burn

I am still hopeful that something like dapsone or lamprene could work if I ever get to that point.

After dapsone/lamprene & one final stab at nasal surgery (if I can find money somehow), I truly give up & will stick with calendula until i can no longer stand living with the overall shitty quality of life exfoliative cheilitis consists of 90% due to dysfigurement problems interacting with social
problems which lead to problems with work, friendship making/maintaining, dating, family, children, etc. For the time being ill continue to "live" my life as a recluse avoiding all people besides work, & keep myself content with dogs, parents, video games, materialistic crap money allowing but because of the nature of this condition (interfering with face / dysfigurement = interfearing with work = problems with money) there are many problems which will snowball & get worse. & I suspect if I died & said my reasoning was "exfoliative cheilitis" then "depression" would be blamed as the cause of my cheilitis & that picking or manipulation of lips must have been involved...this condition is hell but the bigger problem is how it interacts with people in general. the "treatment" of it, ignorance, blatant stupidity surrounding it, victim blaming due to ignorance, dysfigurement of it, in every way interacting with people is the unbearable part of exfoliative cheilitis though the pain sometimes makes me want to drop dead of a heart attack if the skin is too dry. The worst part about ezfoliative cheilitis I find is people. If I could live my life as a recluse & make money as a recluse in my house far from being physically around people, maybe I could stand to endure living with exfoliative cheilitis by being content even if not happy. I have found exfoliative cheilitis makes it hard to not deeply hate people. It's also a shame because my hate & yearning for distance from people is due to the exfoliative cheilitis. how i envy & loathe the normal for being normal...it's so much easier & less disheartening being a recluse living with exfoliative cheilitis rather than putting yourself out there.





Tweet