Cheilitis Continued

[Nati]

Hi Dr. Rockoff,

I have written to you twice before. You can find my entries under Cheilitis Prognosis and Cheilitis Again under the search menu.

After I last wrote to you when my lips got really bad I was put on a potent steroid for five days and then put followed that up with a less potent steroid, Dermatop, and Protopic, both twice a day. After that, the skin on my lips finally grew back, so they weren't raw anymore, but the top layer kept peeling off.

The dermatologist did a culture on me which came back positive for both a staph infection and a massive yeast infection.

So then I was treated with Bactroban for a week and oral antibiotics, and then did three weeks of Loprox.

About a week ago, I finished treatment and to me surprise my lips looked fabulous. Last Sunday I got three bubbly things (one on my upper and two on my inner lower lip) which I guess I will call blisters though they never seeped or anything. I put on the Dermatop twice and they were gone by yesterday (Monday) and just left a large red mark in their passing.

The dermatologist saw me yesterday but of course there was only the red marks left for him to see so he couldn't draw any great conclusions.

I asked him if I should expect this to be a chronic thing like eczema, he said he didn't want to go down that route yet without having me continue the Loprox for another two weeks.

My yeast level was at 4, so he thinks that perhaps it isn't gone yet. He also said I could put the Bactroban on again.  

Despite the bubbles, my skin never broke or became raw like before so I'm still pretty hopeful.

1.) I guess what I would like is your opinion, b/c if it is eczema, my derm has made it clear he doesn't want the method of treatment to be steroids.

2.) Also, the Bactroban turns the part of my lips which were originally raw bright red. Should I still use it?

3.) You have written to me and others with cheilitis that the situations have usually improved and gone away? Do you still find this to be the case? I have read many frustrated people on other web sites who have had this for decades. I don't want to lose hope.

4.) And finally, do you think I can wear lipstick in between episodes, I haven't done so since July and I still have had problems so I don't think it is a factor in irritating my lips.

Thank you so much Dr. Rockoff.

Sincerely,

Nati

[Alan Rockoff, MD]

If your culture showed yeast, that takes you out of the ordinary category of lip eczema.  Yeast should be totally curable.  If the Loprox didn't do it, then your doctor might consider a single does of oral fluconazole.



It's also possible that the yeast is gone, leaving only mild irritation.  A culture may help clarify this.  Meantime, I agree with your dermatologist that steroids should be avoided till the situation is clarified.  



Lipstick is 100% fine.  Putting it on will make you happier about the lips.



Best.



Dr. Rockoff

[dan25]

Hi Nati and Dr. Rockoff,



Nati, I am very interested in the name of the potent steroid that you mentioned using.  I would appreciate some advice from both of you regarding my condition.  I have very serious lip condition that I have had for a long time without any improvement.  The dermatologist that have gone to have refused to do a biopsy or a throat culture.  They have diagnosed is as exfolitory chelitis.  I am not sure if it is the correct diagnosis or not.  I do have a dry crust that forms on my lower lip, but also several other things that take place at the same time.  The lip feels raw and wet at the same time.  The feeling is almost unbearable.  I do not feel as if there is any protective layer on my lower lip.  I feel the saliva on the outside of my lip and I cannot do anything about it.  This condition also makes it difficult to pronounce certain sounds which affect my speech.  The way it looks is the least of my concern.  I am just concerned about this unbearable condition that makes difficult to focus on anything.  I have taken hydrocortisone and nystatin without any help.  Do either one of you have any suggestions?  Nati, could you please provide me with the websites that you have used that discussed lip problems.  Thank you very much.

[Nati]

Hi Dan,

I was never diagnosed with exfoliative cheilitis, what I had was just plain cheilitis probably caused by an allergic reaction to something I used on  my lips and then morphed into a massive yeast infection (Which I'm still dealing with now.)

I'm not a dermatologist obviously, but I don't understand why you were given nystatin, that is usually given to people with oral thrush and would not totally clear the cause of a yeast infection on your lips I believe.

I have been using loprox on my lips and am about to ask my derm for Diflucan to be sure that this fungal invasion goes away, per Dr. Rockoff's advice.

The potent steroid I used was called Clobetasol Propionate. It was so strong that I was told to stop using it the moment my lips unswelled (5 days) I was then changed to Dermatop.

When the doctor gave me Clobetasol, my lips were bright red, swollen, and raw ( I think this was because of lipstick that I put on again and apparently my lips don't like; I'm not sure.)

Regardless, after using Dermatop (the less potent steroid) for three weeks, my lips began to heal but would still flake off, my derm finally decided to do a culture which showed a staph infection and the yeast infection.

Just recently my lips actually feel like lips and I can touch them and wipe my mouth with a napkin without it hurting.

They still aren't completely back to normal, but I have hope that I'll be getting there soon.

My lips never crusted like yours. I totally feel for you with this though because I know how painful and frustrating my bout with this has been. (not to mention that it makes me self-concious.) The websites that I mentioned were actually forums where people on Accutane said they had cheilitis and couldn't get rid of it.

I feel that for something like your condition perhaps a stronger steroid would work. Why don't you ask your doctor for it or ask Dr. Rockoff what he would do. He can give you a much better answer than me. :)

Please keep me posted on what happens. If you need moral support, email me at ***@****

Ciao,

Nati

[frustrated-in-san-francisco]

I am so happy I found this site with all the information I've read I feel so much better. I thought I was the only one suffering this condition (cheilitis). I have gone to several doctors, like my primary care physician, ear,nose & throat specialist, I've seen a doctor in hemotology/dentist, and also a dermatologist. I was a little upset because the first thing they ask me when they saw my lips were, not only how long have I had the condition for, but if I were very sexually active and if I am healthy, as in asking if I know if I am HIV+. I'm a 23 year old female and I have been with my boyfriend for several years, so that caused a scare, and I haven't been with alot of people. They all assumed it was the herpes virus since I had the little blister like clusters on my lips. But after many exams it came out negative for herpes. I went to UCSF hospital thinking I would get some accurate treatment, but being so frustrated, I stopped seeing this woman and went to a Dermatologist at CPMC who helped me alot, but unfortunelty only saw me when the swelling went down. To cut a long story short, I had the swelling of the lips, first it started with the top lip, then the bottom, it later became really red along with the swelling and also had a little bit of clusters to it. I was going crazy not knowing what it was, but since I've found this website I will go back to my dermatologist and see if I am right with my diagnosis. I am pretty sure that is what I have, and I've read alot of the symptoms and I have had them all. I really think my lipstick is possibly causing it and maybe even milk. well I'm so greatful I found this site, I am glad I'm not the only one suffering. Now I look foward to treating it instead of hiding from the world.

[MsLady]

Hi everyone... I have been recently having problems with my lip upper lip(mainly) swelling and my lower lip feeling really dry around the bottom of it, like the skin was peeling. This has been going on for a few weeks now, but I haven't known what to do. I thought they were just excessively dry until I noticed the swelling and the tingling feelings I was having. Today I had the realization that my lips were peeling, and by looking online It brought me to this website. Reading your comments have helped alot. But I would appreciate it if someone could direct me to more websites that could give me more information on my condition, I'm thinking yeast. I don't have much money to pay a doctor for a visit, honestly. I want to just buy some medication and be done with it, if possible. So your help would be appreciated very much. If possible, I would love for someone to email me if you could help me at all. Thank you so much, in advance!!!

[Nati]

Hi there,

I would get hydrocortisone cream and see if that helps. If it doesn't I would try to go to a doctor, they need to do a culture if it is yeast, which will also cost you money, but if you test positive it will be well worth getting rid of it. TRUST ME!! (Someone who has had lip problems for a while.) -Nati