I was diagnosed with Exfoliative cheilitis by an oral & maxillofacial pathologist in June 2017. I first got Exfoliative Cheilitis in November/December 2011. There were 2 major events in summer/fall of 2011 which are associated with the onset of my exfoliative cheilitis. (Event #1) in July 2011 I had an aggressive open nose rhinoplasty. (Event#2) in October 2011 I had 4 post-dog-bite IMOVAX rabies vaccination shots. In November/December 2011 I first developed my exfoliative cheilitis which was incurably dry, peeling, tight-skinned, lips; the onset was very stark/acute.Since November/December 2011 there has not been a single day where my lips have been normal in function/appearance.
I believe that the imovax rabies vaccinations I got in October 2011 are what caused the acute & permanent onset of my exfoliative cheilitis & because of that, I also believe my exfoliative cheilitis is incurable & permanent. I strongly warn people to be aware of the potential connection between rabies vaccination & exfoliative cheilitis; you could be someone vulnerable & this could happen to you as it did to me. A key component of exfoliative cheilitis is keratin dysfunction. There are many reports about post-rabies vaccination aloepecia in dogs & keratin dysfunction is a strong component involved in that aloepecia. I believe there is a connection between rabies vaccination and keratin dysfunction particularly in susceptible people/certain genetic background. I saw someone else write a post about their exfoliative cheilitis occuring in connection to a vaccination but if I recall their vaccination was not post-bite rabies vaccination shots.
Unfortunately I believe people who are like me, who have not seen a single day of normal lip function/appearance since the onset of their exfoliative cheilitis, will be permanently damaged & incurable.
I have been seeing a very reputable oral & maxillofacial pathologist on the East Coast who is trying experimental treatments with me all of which have failed. I am now also going to be seeing another very reputable oral & maxillofacial pathologist in Maryland. I still have a small amount of hope in trying anti-leprosy antibacterials such as Dapsone and Lamprene and I will report my experiences with those.
To anyone who has legitimate exfoliative cheilitis (no off periods), I recommend not wasting your time and money with any topical steroids. I tried the strongest topical steroid my doctor could find, clobetasol, and it did nothing. I tried 2 others of varying strengths (one mid-range topical steroid, the other a weaker topical steroid) both were a waste of time, money, & health-jeopardizing. Exfoliative Cheilitis is one of the worst most misunderstood & frustrating conditions to oral dermatologists (this was told to me by my highly-regarded oral pathologist). Unfortunately this sort of website attracts different sorts of exfoliative cheilitis such as misdiagnosed "on and off" exfoliative cheilitis & factitious exfoliative cheilitis so without pictures it is unfortunately hard to believe the word of people on this website but I strongly believe that anyone with non-factitious exfoliative cheilitis who have not seen any "dormant periods" are the people who truly have exfoliative cheilitis like me, & I believe there must be some sort of keratin-connected problem which is causing it because of the acute onset of my EC post-vaccination. It is also possible I got my EC post rhinoplasty but I do not recall having EC in the months of August, September, October which point more towards the cause being the rabies vaccination shots & as I stated before the connection between post-rabies-vaccination aloepecia in dogs which concerns keratin-dysfunction found in the cells of the dogs & my post-rabies vacciation keratin-dysfunction seen in my exfoliative cheilitis. I also think there could be an immunological connection between vaccination & exfoliative cheilitis & that connection i imagine in theory could extend to viruses in general but that could also extend to the immune system's RESPONSE to viruses/vaccinations but really when you are looking atvaccination / viruses / immune system response the unfortunate answer is permanent damage / incurable treatment resistant damage so there is no happy packaged hands on "I-can-fix-this" answer.