Re: newly diagnosed cheilitis - help!!!

I see it's been a few months since you posted your message, so I hope you're still checking this message board.

I could write a book about my personal experience with granulomatous cheilitis, but to give you the abridged version, THERE IS HOPE!

I began suffering in Summer of '96, during my freshman year of college. I went several years before being correctly diagnosed. I tried every Rx steroid ointment on the market, and then several oral steroids that I can't even remember. I then tried corticosteroid injections that worked, but only temporarily. Finally, I was referred to Dr. James Sciubba at Johns Hopkins in Baltimore (I live in NY). He prescribed Lamprene (clofazimine), taken orally. It may not work for everyone, but I was on the drug for a couple years and have been very satisfied with the results it has given me. I no longer ever take the drug, and have maintained my satisfaction with the condition of my lips.

Are my lips back to 100%, normal? Perhaps not, you will still never find me without vaseline nearby, but the improvement has made a dramatic difference in my life (physical, mental, and emotional), which I owe largely to finding Dr. Sciubba (in my opinion, the foremost clinical expert on this condition and a truely compassionate professional). Tweet