Date:   4/24/2008 7:19:45 AM ( 16 y ago)
Hits:   9,372
URL:   https://www.curezone.org/forums/fm.asp?i=1159742

Hello

This is my first time posting to this group after reading many entries for several years as until now i had nothing constructive to offer the group in terms of any way to truely improve this seemingly endless life altering exfoliative cheilitis condition.

Ironically, my lips which are naturally full and what others considered one of my best features before this severe condition of chronic exfoliative cheilis .

It all started with my very first dermatologist giving me TOPICAL STEROID CREAM with vaseline on top to treat what at the time was a tiny area on my lower right lip which had gotten infected and damaged skin from biting my lip as a nervous habit but he told me to put it all over my top and bottom lips for what reason i don't know ,negligent advice, and unfortunatly i listened and followed through with the professional dermatoligists treatment.

This combination of steroid cream and vaseline on top as the steroid cream dried out my lips horribly , literally severely burned all of my lips skin top and bottom starting the exfoliative cheilitis problem My lip skin became white and blanched other ares beet red swollen,etc and the pain was excruciating.

Subsequently after years of trying so many topical lip treaments I ultimatly ended up having a biopsy on my lower left lip that made my lips much worse due to poor procedural and post op care (a nightmare of a story in itself ) It showed "cheilitis, non specific inflammation, secondary infection"

Afer this totally unnecessary biopy which damaged my lips even more as the dermatologist burned my lips with an agent to stop it from bleeding after the biopsy ( horrifying experience)
I FINALLY FOUND A RESPECTABLE ,KNOWLEDGEABLE, CONSERVATIVE DERMATOLOGIST who also knows about the emotional condition I have Body Dysmorphic Disorder as well as my resulting very severe fully encrusted lips of chronic exfolitaive cheilitis.

I had suffered deeply with exfoliative cheilitis from picking my lips for at least 6 years until, where the symptoms are much more managable and noticably improved.

My current dermatologist who practices at a teaching hospital/medical center put me on a short term dose of oral PREDNISONE for 15 days to be exact 40 mg daily for 5 days, then 20 mg for 5 days, ending with 10mg for 5 days.

I AM HAPPY TO SHARE WITH YOU THAT THIS ACTUALLY IMPROVED MY EXFOLIATIVE CHEILITS TO THE POINT THAT I DO NOT REALLY PEEL MUCH ANYMORE I am also using pure vaseline gently , tapping it on and sometimes lightly gliding it on frequently to my lips very frequently the operative word being FREQUENTLY for me anyway. It is the only thing i can put on topically causing no bad reaction.

I was told also to use aquaphor to keep my lips moist but as my condition was so severe it burned my lips but i know others swear by it

I am very much aware that each individual's case with exfoliative cheilitis is UNIQUE .
What has helped me might not help someone else
BUT just in case my professional intervention with oral prednizone might help someone else of course with the help of a professional doctor to monitor your case

I wanted to share story if you are at your wits end and no social life whatsoever , homebound from embarrasment and humiliation to give those who have no hope as was my case for any improvement some possible glimmer of hope

As i had mentioned before, I also suffer with a severe case of Body Dysmorphic Disorder so exfoliation for me was equivalent to '''self mutilation''' so i no longer had the option to exfoliate as it was a trigger for me to feel guilty that i have damaged my lips even more

Again , this is from my perspective I know that much of this might not apply to your own situation regarding exfoliative cheilitis

Now I am simply using pure vaseline frequently on my lips to keep them moist
At most my lips have tiny pieces of skin that might develop and come off from even lightly tappping my lips with vaseline . sometimes a little worse than others

But honestly in pictures you can not even tell i had any problem with exfoliative cheilitis compared to before.

This has not only helped with the physical and emotional pain my once very severe exfoliative cheilitis but has given me my life back to a certain extent

I can now try to use my lips for the most part in all of the ways they are intended to be used with out pain or fear of damaging them worse

Even talking used to kill my lips so I would have to sacrifice being social with my friends and family talking verbally for what i knew would end up being quite severe lip pain and swelling

The strong yet short term shot of prednizone orally FOR ME was the boost that my lips needed to get the inflammation down and to stop growing excess skin and peeling constantly

If my posting this messege has helped one person who the same treatment under strict doctors monitoring then it was worth the severe struggle i have had with exfoliative cheilitis which once stole my life in many ways.

Please feel free to messege me .
This is the first opportunity to offer this group any hope for at the very least ''improvement'' of course with the consultation of a professional to evaluate your own individual case

Thank you for taking the time to read my story. I empathize with all of you and hope that one day each one of you can find improvement if you have not already

It is indeed life altering living with it and amazingly life altering when you find some relief/ improvement

I had never had to consciously think of nor appreciated all the ways we use our lips before suffering in so many ways living with chronic exfoliative cheilitis.

Wishing you all the best !!
 

<< Return to the standard message view

fetched in 0.03 sec, referred by http://www.curezone.org/forums/fmp.asp?i=1159742