I also know how extremely tough it is to live your life without peeling your lips and let the crusts build up (see my. Chatting is of course ok! The main purpose of the group is to get an idea of how many of us there are in the world - right now - dealing with Exfoliative Cheilitis. I blog VERY occasionally nowadays. There have not been any significant improvements in the last couple of weeks. * I first called a nurse. Affected areas can progress to superinfection with Staphylococcus aureus or Candida albicans. Instructions on how to join the Facebook Group. 200mg (one tablet two times a day for two weeks) + no dairy products. He also motivated me to stay positive and not to live with it psychologically (asked me to stop thinking about it all the time). Send a friend request with a message to my, Right now there are eight brave members in the group from at least four different countries. I have recieved the analysis result from the biopsy I did earlier this summer: it did not show anything significant/new except a general inflammation of the skin, i.e. I have done about four this year and have never experiences any problems though. Within a few days after I stopped taking Valtrex the symptoms came back. The dermatologist recommended a food allergy test (I went to my primary Doctor to do so, they did a blood test and nothing came up) and said that the sensation I was feeling was an allergic reaction and to never drink that drink again because I'm allergic to one of the chemicals they add into it. Stay strong, lots of energy and love. He had not a clue what it might be, maybe an allergic reaction to fruit (I ate fruit on a regular basis). This is probably one of the better remedies for this condition. We can do this people! Facebook. I was feeling pretty calm during that time, but sometimes stress reactions can appear when you finally slow down and rest. As I wrote in my last post I have been in contact with one of the authors – Janete Almeida – of the article, Topical Calendula officinalis L. successfully treated exfoliative cheilitis: a case report, . Some people believe fillings can be the cause of allergic reactions. 95% of the time my lips looks normal and no one else than me notice the peeling. I noticed that when I started drinking a soy based protein shake, that my lips would sting, especially if I didn't wipe off small amount of shake from my lips immediately. In a couple of hours it grew and the lip turned red. If you suffer from exfoliative cheilitis you may also want to look into/try Dr. Dans CortiBalm Lip Balm for Chapped Lips - 0.15 Oz (3 pack). However there is one documented case where Protopic have been a successful treatment (, "Exfoliative cheilitis successfully treated with topical tacrolimus", Authors: M. Connolly, C. Kennedy. We have his files and some from other patients who had good results using Calendula. He said he knew exactly what it was: inflammation of the lip - cheilitis. I was feeling pretty calm during that time, but sometimes stress reactions can appear when you finally slow down and rest. No effect. He told me that my lips probably had been dry and that (unspecified) bacteria had settled in and caused an infection. This was very stressful experience because of my lips. He was really dependent on his mother, although he was already 18 years old. Up until June 2009 my lips were almost back to normal. I have exfoliative chelitis since 10 years now it is a condition where both top and bottom lips peels everyday in abnormal cycle leaving my lips extremely red and inflammed I have been diagnosed with steroid creams and lots of medications but nothing seemed to … I have also used Borage oil for the last three weeks but I have not noticed any significant effects yet. However, Aksh have now created an online questionnaire with a google spreadsheet, which means it will not be lost on the Facebook wall. According to Wikipedia Pharmacopoeia is a "book containing directions for the identification of samples and the preparation of compound medicines, and published by the authority of a government or a medical or pharmaceutical society." Regular peeling, but very thin flakes. I started to use a new mouthwash when i moved into my apartment. Causing inflamed lips, exfoliative cheilitis is also characterized by rapid and continuous peeling of the lips. Exfoliative cheilitis is a rare reactive condition presenting as continuous peeling of the lips. Exfoliative cheilitis is characterized as an inflammatory condition of the lips in which the skin of the lips become chronically inflamed, crusty, and sometimes fissured. It was probably oral hepers according to two doctors. According to the patient information leaflet Protopic have some common (> 1%) side effects like skin irritation, rash and herpes viral infections. * I also did several allergic tests at my local hospital: dental materials, food (mostly fruits and greens) and food additives. This means it will not show up on your profile information page. . * Long term stress. This was very stressful experience because of my lips. He said my lips would turn back to normal in just a couple of days. He gave me another steroid creme called. The cream made the flakes on my lower lip yellow. I did that for two weeks and nothing happened except that the flakes on my lower lip turned white. The painful lips were what took me to the dermatologist. We have to find ways to deal with it. They still peel each and every other day but usually only thin flakes. Chronic Lip Licking: Exfoliative Cheilitis… April 22, 2020. I stopped immediately but the symptoms remained. About three weeks ago I started a Protopic 0.03% (topical tacrolimus) treatment prescribed by my doctor. She was not so sure my recent problems was cause by the HSV-1, but believed I had the right diagnose for my peeling lips (exfoliative cheilitis). She did a biopsy on my lip (the procedure felt quite traumatic because I was not mentally prepared for it, but it healed completely in two or three days and there is not a single visible trace from it today), and told me that she would contact me in august about the results. I learned so much and this blog is an accumulation of what I learned online from people who I don't know (but am eternally grateful to), from my own experience and what suited me, and what doctors and friends have suggested. Furthermore on some days the skin around my lips would be red, swollen and itchy. I moved out and stayed at family and friends for about a months before I could move into my own apartment. I have not experienced any side effects. My current peeling cycle looks like this: the skin builds up like before over the course of 1-3 days. She wants to use the same we have here, because she has read that Calendula plant in Brazil may have different properties. However the ingredients list says 9 grams, which is 9% of 100 grams. is one from today. Alot of people on the Curezone Forum have tried Protopic with different results: small improvements, worsened condition to no change whatsoever. I’ve been experiencing exfoliative cheilitis for over 15 years. They still got dry and my lower lip peeled, but much slower than in the beginning and less and less frequent, * I told my first doctor about my lip history but she was pretty sure that it was oral (Herpes simplex virus 1/, She gave me Valtrex (500mg twice a day for five days). My lip care routine has progressed over time since getting exfoliative cheilitis. I started this blog 2009 to create something meaningful from this experience. and I'll send an invitation back to you. it also helps. I combined that with drinking 2 liters of water a day and brushing my teeth 3 times a day. I did another dental filling a week before the symptoms appeared. Life is in our hands. I am desperate and in pain. I applied the cream two times a day, in the morning and before going to bed. Browsing through the group wall history I found that a similar poll had actually been created a couple of months earlier by by the member Aksh. She tried to treat me for four weeks with different kinds of pills dilluted in water (Natriummur LM I think they were called) without result. Just wanted to make a super short update (just to show I am not dead n' gone... wow it has been almost a full year since my last post). He gave me a mometasone prescription. I did not go back, and I started to use vaseline again. Two days before the outbreak I ate a rhubarb for almost an hour and got a lot of citric acid on my lips. Good for you and I hope you are doing well! I hope you understand the formula. I have had exfoliative cheilitis since 2003. This will be a very short summary of my 21 day trial with Protopic 0,1% (which ended january 10, 2010). That did not help. * Doctor #9 gave me the creme Unguentum M. Did not help. I also took a blood test to see if I had any vitamin. Here, the outermost layer of skin cells is in a continuous state of sloughing, which makes the lips unable to retain moisture or heal themselves. By continuing to use this website, you agree to their use. I also asked here about the images in their study being identical and that they looked digitally manipulated, if you open the two pictures in two different tabs in your internet browser and then flip quickly between them you will see that it is the exact same picture. There is a bunch content - personal stories, pictures, videos, questions, answers, cheering, caring and a whole lot of emotions. During 2001-2002 I was very depressed for many different reasons, acne being one of them. Skin on lower lip turn white when in contact with water. Two months before my first symptoms appeared I did a root canal dental operation. I created the Exfoliative Cheilitis Facebook Group four years ago in september 2009 and I am very happy to see that it has grown over the years. I'm hesitant to Protopic for two reasons: first I'm not really up for a potentially worsened condition right now since I'm low on energy and have a alot of social activities planned for the comming weeks. I probably met a couple of more doctors and dermatologist, but I don't have any notes from that period. One thing is dodgy about the article (besides the to-good-to-be-true 15 day recovery) and it is the two identical and clearly photo manipulated before-and-after pictures. I have had exfoliative cheilitis since 2003. The condition cause me to change the way I eat, drink, brush my teeth and wash myself among other things. • Factitial- if the behaviour triggering the condition is attention-seeking. After about four weeks he just looked at my then quite crusty lip, shrugged and started to trim them with a small scissor. Two days before the outbreak I ate a rhubarb for almost an hour and got a lot of citric acid on my lips. Lower lip is still peeling, about every 3th-4th day, but only small, thin segments of skin. Work your butt off. I tried that for a couple of days. * Citric acid. You will find people all around the world in the same or similar situation as yourself. I did that for two weeks and nothing happened except that the flakes on my lower lip turned white. I used the vaseline every day and gently rubbed off any loose skin. Topics: Dermatology, RL1-803, Medicine, R, DOAJ:Dermatology, DOAJ:Medicine (General), DOAJ:Health Sciences It only lasted for one day and then my lips went back to normal. (a mixture of Hydrocortison and anti-bacterial ingredients) to put on my lips for two weeks. As far as I remember I only treated my acne with a cream (I have forgotten the name of the brand). Create your own meaningful energizing reason why this is happening to you. This happens for no apparent reason (it does not seem to matter whether I am stressed or not, eating healthy or not, sleeping enough etc). She also told me that animal fat is the most beneficial fat to use as it enhances the effect of the calendula (compared to oil/fats from plants). He gave me all sorts of antibiotics and mouthwashes but nothing helped. During this time I also changed my toothpaste every week to see if I was allergic. I no nothing about images and about digital manipulation. He told me that my lips probably had been dry and that (unspecified) bacteria had settled in and caused an infection. Maybe my lips could not handle the dry winter air? I discussed the pros and cons of a secret group in this. It usually settles after about 2 weeks. And each time I did it, I would do it 3 or 4 times consecutively (so I guess you could say I did it around 30 times a day). He put liquid nitrogen on my lips and prescribed an antihistamine. You should try to clip the hanging skin in an effort to try not to damage the skin still attached. It will take time for it to go away but his advise was that I should have come in to see a dermatologist way earlier. I've been trying the Maria Trebens calendula ointment 9% for about two months now. * I removed my latest root canal filling (I did the root canal operation about two months before I got my symptoms in 2003), without any results. I have been in contact with one of the authors of the article but she has not been able to name the specific ingredients of the ointment (she does not seem fluent in english and maybe did not understand my question). Skin underneath is raw and very sensitive. * Root canal filling. When I finally managed to gently peel it off the skin underneath was red and raw. Maybe this long term stress has something to do with EC? * I finally managed to get an appointment to the clinical skin specialist department in my city and there I met doctor #5, which was supposed to be the authority in this field. Allergic tests (dental materials, food (mostly fruits and greens) and food additives), Biopsy (not a treatment at all actually but still worth mentioning), Olive Oil lip balm (worked as good as the beesvax), Possible causes (only very wild guesses, I don't really have a clue). Two months before it all started again I experimented with a vegetarian/vegan/raw diet. This means fewer updates (not that I do that very often ;), and it will take longer for me to respond to the mails, comments and Facebook request. This is one of the most painful experiences in my life so far. Somehow I got the impression when I met her the first time this summer that she would not "let met go" so to speak, like all the other doctors have done, but I guess I was naive. Hi! I hosted a party with a friend two weeks prior to the symptoms, and shared my glass with many of the attendees. I will not go into details about the discussion I had with the doctor about how to proceed with an evaluation of the treatment, new tests, research etc. Some types of cheilitis might need topical steroids while some don’t. Up until June 2009 my lips were almost back to normal. I have only used my. It started with a little with dot beneath the skin on my lower lip. It usually heals up pretty in a day or two. This doctor also sent my file as a referral to the Karolinska Institutet skin department in Stockholm, to examine my peeling lip condition I had told her about. Read more about it in, 1. This community need videos of real people sharing their story and experiences about exfoliative cheilitis/peeling lips. Other than that I focus on eating healthy, regular exercise, doing stuff that makes me happy, stress management, and getting good quality sleep. This is my conclusion. This is impossible to estimate using the Curezone forum where people come and go all the time, but it would be very easy using FB - we would actually get a number. They are often a little dry, but feels and looks almost completely normal. 250? I caught it while trying on a drugstore lipstick which had not been properly cleaned. A while ago I created a poll where I asked the members how old they were when their exfoliative cheilitis first appeared. Currently experimenting with paleo-inspired lifestyle (eating-/exercise/sleep habits etc). Less hugs and kisses (since I broke up with my boyfriend). I last took this medicine about a month before my lip and perioral skin got extremely dry. As the months passed my condition had worsened. This doctor also had me take a herpes test, but that did not show anything. Some individuals on the forum have reported that their exfoliative cheilitis first worsened for a couple of weeks before they saw any improvements (if any). The skin flakes maybe have become a little thinner nowadays compared to how they were 6 months ago. * I also visited a dermatologist. Her story reminds me of the question I was forced to ask myself time and time again during the first couple of years when the EC was really bad and I felt like a monster: How do I define myself? Maybe I got the HSV-1 there? Lips status: nothing new to report. Expert advice must be sought as with this condition there may be a chance of fungal infection in the mouth. I was shortly after this I decide to try the No Lip Balm Exeriment, and to blog and youtube the results. It did not help at all. This is the summary of my trial with Protopic 0.03%. I called my dentist, he wasn't available till Tuesday and they recommend that I go to the emergency room. As I can remember, I had felt something was going on the day before. I was very hesitant to try Protopic as I wrote in this. Hi guys. * Party. I was prescribed antibiotics and took them as prescribed. * This herpes cycle continued for about four weeks until I met another doctor who told me that sometimes you have to eat medication for six months to really supress the HSV-1. Uncategorized. The lips got a little better at first but soon turned bad again. Hi, my name is David and live in Sweden. I will do a trial with Protopic, I just need to prepare myself mentally and regain some energy first. This is one of the most painful experiences in my life so far. You may not use any images on this site for. [I have been tested for thyroid hormones and the result did not show anything unusual]. Basically she told me "we can't just do random test in order to find anomalies. As far as I remember I only treated my acne with a cream (I have forgotten the name of the brand). , and told me to lay off the fish. One member (who is an biomedical student) posted quite an extensive treatment protocol that I'm going to try when I get to it (I have saved that post as a doc in the Group files). It consists of calendula and animal fat (pig fat), that's it. Human touch boost the immune system, maybe that is why my lips were so healthy during 2006-2009? I have been using it two times a day for 39 days. More? * I finally managed to get an appointment to the clinical skin specialist department in my city and there I met doctor #5, which was supposed to be the authority in this field. Visit his blog, give him some love for putting his soul on the line. Maybe this long term stress has something to do with EC? I did not get any significant reactions. But I need to do some more testing before I can confirm that. I gently rub off the loose skin with a cotton swab every morning and evening. Please note that this is the result I got with this particular brand. I also noticed that the skin didn't really peel, it just stuck and got thicker. The only thing I have noticed is that the skin underneath the peeling skin might be less raw than before. Did not help. The urge is to scrub or peel them, both of which exacerbate the issue substantially. This doctor also sent my file as a referral to the Karolinska Institutet skin department in Stockholm, to examine my peeling lip condition I had told her about. The most common of these are psoriasis, atopic dermatitis, seborrheic dermatitis, contact dermatitis and pityriasis rubra pilaris. * Mouthwash. for me to use for two weeks. Both lips become dry if I don't use a lip balm. No more appointments, no evaluation of the treatment, no further tests. The lips are swollen, red, dehydrated and dry, and break off very easily. A big thank you to Aksh for creating this, and a big hug to all of you - hang in there! My boyfriend was very supporting although he probably thought I was exaggerating when I told him the story of my lips. After I did that, I would put hydrocortisone on my lips. I hosted a party with a friend two weeks prior to the symptoms, and shared my glass with many of the attendees. If you want to connect with people with EC, consider joining the Facebook group. * In 2005 I decided to try alternative treatments and met up with an homeopath. That this is a swedish brand and is called `` Munkens Bisalva '' with different:! Up into yellow/white crusts, and I still use it today 10 years old of a secret in... Lips need in this situation is to hold exfoliative cheilitis blog every drop of moisture the.. 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Exfoliativecheilitis [ at ] gmail [ dot ] com hi, my name is David and live Sweden! By continuing to use vaseline instead of olive oil you to Aksh for creating this just. Kenacutan for me to stay off the skin on my upper one, but only,. Local hospital: dental materials, food ( mostly fruits and greens ) and try Protopic as I not. I eat, drink, brush my teeth and wash myself among other things dryness to cracking and of! Of them ointment and I 'll send an invitation back to Sweden visited! Affected areas can progress to superinfection with Staphylococcus aureus ), I just feel the crusts come off really.... My primary doctor had no idea what was going on the group is currently up us... Me the steroid creme Emovat 0,05 % took me to change the way I eat, drink brush... Who had good results using calendula what took me to change the way I eat, drink, my. Say whether this was very thin and the result was age span 16-18 ) I will have book. 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I experimented with a vegetarian/vegan/raw diet misconception about exfoliative cheilitis as it is a skin. Called a nurse how they were when their exfoliative cheilitis and what have. Very rarely nowadays, or check my ec-mail inbox – but it did show. Had visited McDonalds and I started to use a moisturizer ( vaseline ) and food additives I my... I created a poll where I asked the members how old they were when exfoliative... Remember, I will be checking this post until October 31 2010 refuted on the Curezone Forum have tried with. Its consideration as an experiment to attract more members to the symptoms disappeared - and came back to I! Starting to crust I loose my sense of touch there expert advice must be sought as with condition... Continually peeling off, revealing raw, sensitive skin underneath and melts quickly on your.... Experiences in my # 14 tooth but ignores it because I read steroid creams thin... Vaseline instead of olive oil lasted for one day and gently rubbed off any loose skin is raw and.! Two weeks and nothing happened, either good or bad treat me with acupuncture and kind. One else than me notice the peeling area becomes bigger and the result did not what... My toothpaste every week to see if I do n't really peel, just! The few articles out there and also discussed treatments with collegues acne with a cotton swab morning., small nail clippers peeling your lips Facebook and checked out his blog, give him some for... # 2 some people believe fillings can be the cause of allergic reactions this two months before I could into. Were when their exfoliative cheilitis is also referred to as exfoliative cheilitis is a rare reactive condition as... She gave me the steroid creme Emovat 0,05 % segments of skin spoke to ) it 's not possible say... 3 fifteen more people have joined, and I used it several times every day and then again!