Lip status and treatment routine as of 2014

Hi guys. I think it’s about time I wrote an update on my lip status and treatment routine.

Lip status

My lips have been good the last couple of years. They still peel each and every other day but usually only thin flakes. 

1-2 times a year the EC flares up (more inflammation, the peeling area becomes bigger and the flakes thicker). 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). It usually settles after about 2 weeks.

95% of the time my lips looks normal and no one else than me notice the peeling.

Update: I was asked to upload a photo so here is one from today. This is what my lips looks like most of the time. Notice the small area on the left side of the lower lip: it shows some signs of peeled skin and is slightly more red. It usually heals up pretty in a day or two.

Treatment Routine

I still have to use a lip balm ointment 2-3 times/day or else the skin of the bottom lip becomes very dry and start to crust. 

I still use the same beeswax ointment that I have been using for about ten years now. It is a swedish brand and is called "Munkens Bisalva". Read more about it in this post from 2009). I don't store it in the fridge anymore though.

How I apply it:

1. I take a cotton swab, dab it in the ointment and put some on my lips 

2. I gently rub my lips together

3. Finally I take a paper tissue and dab it around my mouth a little to make the lips less ”glossy” looking

If the skin is loose somewhere it usually peels when I bring the cotton swab to that area or when I rub my lips against each other.

I try not get the lips wet (when I shower or swim) as this usually makes the skin peel more easily and makes the loose flakes turn white. 

Medication and/or Supplements

None.

Diet

Generally I follow a diet that is a mix of the mediterranean diet, slow carb diet and the paleo diet: 

Lots of: 

• Fish, eggs, chicken and lean meat
• Greens (all kinds)
• Berries 
• Fruit
• Squash
• Root vegetables (sweet potatoes, potatoes etc)
• Nuts and seeds
• Olive oil
• Water 

A little less of (than before):

• Milk, yogurt and cheese
• Wholemeal pasta and bread
• Brown rice, bulgur and quinoa
• Lentils and beans

Occasionally:

• Chocolate
• Ice cream

Very little:

• Candy 
• Alcohol (occasionally I like to kick my heels up sometimes but it rarely happens more than 4-5 times a year)

No: 

• Soft drinks
• Cigarettes
• Drugs

Lifestyle

• Exercise: 30-60 minutes 3-5 times a week
• Sleep: 7-8 hours per night
• Mindfulness practice: 10 - 40 minutes per day (body scan, focused breathing etc)
• Sun: I try to go outside for at least 15 minutes per day no matter the weather
• A social life: Talking to/meeting family and friends on a daily basis
• Engaging in stuff that is meaningful (to me) or interesting or just plain fun

I don't follow the above diet or lifestyle 100 % of the time. Just like the rest of you, I am only human :) 

If you have any questions you can post them in the comments field and I will try to answer them as soon as I can.

How do YOU define yourself?

This is an inspirational talk about self-image and outer appearance from a girl with a very rare syndrom that prevents her body from storing fat or building muscle.

I can relate to much of what she is saying. 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?

Life is in our hands. We are the ones that decides what define us. Turn the negativity around and make it into a ladder to climb your goals. Work your butt off. 

So true.

Facebook group reach 200 members

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 want to thank all you wonderful members for contributing your ideas, thoughts, feelings, treatments, tips, pictures and theories on the page wall. I am specially glad to see that you are all helping and supporting each other.

We're in this together, we have each other. Come rain or come shine.

New link: Exfoliative Cheilitis Database

Hello friends!

The Facebook group is currently up to 173 members - wow! 

If you have not joined already, please consider it. You will find people all around the world in the same or similar situation as yourself. There is a bunch content - personal stories, pictures, videos, questions, answers, cheering, caring and a whole lot of emotions. All the activity on the group wall is a bit overwhelming but check it out and see if it's for you. 

You will find information on how to join here.

Facebook Poll

A while ago I created a poll where I asked the members how old they were when their exfoliative cheilitis first appeared. 36 members participated and the result was age span 16-18. 

This is a screen capture of the poll.

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. This is one of the drawbacks with a Facebook group: information - good or bad - is eventually lost or pushed out of sight, until it gets repeated a couple of day/months later. 

The Exfoliative Cheilitis Database

However, Aksh have now created an online questionnaire with a google spreadsheet, which means it will not be lost on the Facebook wall. We need all the data we can get on our condition, and it seems like it's up to us to create it. So please take a couple of minutes to fill in your answers. We can do this people! 

You will find the questionnarie here. 

A big thank you to Aksh for creating this, and a big hug to all of you - hang in there!

New link added: Daniel Miller's blog

I was contacted by Daniel on Facebook and checked out his blog. As you know I'm very reluctant to the word "cure", especially using it before one has finished a trial/experiment and have been symptom free for a couple of months/years, but I totally support the idea of blogging and especially vlogging. This community need videos of real people sharing their story and experiences about exfoliative cheilitis/peeling lips. I also know how extremely tough it is to live your life without peeling your lips and let the crusts build up (see my "No lip balm experiment" under Treatment Trials in the sections.) 

Visit his blog, give him some love for putting his soul on the line. A big thank you to you Daniel.  

Daniel's blog: Cure for peelings lips! 

Facebook Group member status: 89

Wow, the Facebook Group is up to 89 members. That's pretty awesome. 

As you all know I blog very rarely nowadays, or check my ec-mail inbox – but it do happens! :) I have limit my time I spend on EC to answering friend requests on facebook in order to add new members to the facebook group.

There is much activity on the Facebook Group wall: members post questions, treatment routines, encouragement etc. 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).

Lips status: nothing new to report. Regular peeling, but very thin flakes. Every once in a while I get a flare up for a week or so. But on the whole pretty the EC is pretty stable. Currently experimenting with paleo-inspired lifestyle (eating-/exercise/sleep habits etc).

Thank you for sending me such warm, honest, brave messages, mails and encouragement. I'll stay in touch every now and then!

Create your own meaningful energizing reason why this is happening to you. Stay strong, lots of energy and love.

Instructions on how to join the  Facebook Group.

Facebook group is up to 68 members (plus some short news)

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). 

The facebook group has 68 members at the moment and the wall seem to be alive and kicking with activity.

EC-status: Nothing new really to report. I have made a bunch of new tests (blood, vitamin, allergies), but nothing has shown anything significant or out of the ordinary (my plan is to post some more detailed data on this later).

Lips have been behaving pretty much the same as in the last year (pretty stable, not so much swelling, regular peeling, mostly thin flakes, flaring up occasionally every other month or so for 3-4 days before it becomes more stable again.)

I still use a beeswax lip balm. Other than that I focus on eating healthy, regular exercise, doing stuff that makes me happy, stress management, and getting good quality sleep.

Stay strong people.

Currently on hiatus

Hi friends

As you might have guessed, this blog is currently on hiatus; I have a new job that is taking most of my time and energy. 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. But I am still here, and I appreciate every single word you send me.

Peace of mind to you all.

PS. My lip status is pretty much the same as in the last post; the skin on my lower lips peels in thin flakes.

Calendula Ointment 9% Trial - Postmortem

I have been out of the blog loop for a while, sorry for the delay everyone. I've been trying the Maria Trebens calendula ointment 9% for about two months now. This is my conclusion.

Did it help?

I have not noticed any improvement, my condition is pretty much the same as before. Please note that this is the result I got with this particular brand. Maybe the results would have been different if I tried the exact formula, with the brazilian calendula (as you can read in the mail below brazilian calendula may have different properties than the european one).

Side Effects?

I have not experienced any side effects.

What's next?

I've been in contact with another doctor and I'm going to do a new battery of tests next week, both blood samples and allergy tests.

A side note - the reseacher speaks

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. I got some new mails about a month ago; she could now provide me with the specific formula used in their study. 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). She responded she knew nothing about it.

Here are the two mails:

Date: 2010/4/9

Subject: Calendula

Dear David

I am sorry for our delay...

I hope you understand the formula. If there is any doubt please let us know. We have more cases treated with Calendula that showed good results.

All the best,

Janete

Calendula officinalis (TM)10% in ointment q.s.p 100%

Vegepharma 10g

EDTA 0,1g

Lanetten 20g

Cosmoguard 0,1g

Benzalcon chloride 0,1g

Glycerin 12mL

Palmitato de cetila 3g

Karitê butter 5g

Distilled water 100mL

I have also seen the site from Weleda.

http://www.weleda.co.nz/Product_Display_29.aspx?CategoryId=8&pageId=0&ProductId=3665

Date: 2010/4/12

Subject: RE: Calendula

Dear David

I did not have time to read everything. I think it its important to consider emotional distress. As you have seen in the paper, our purpose was to describe a case of recalcitrant exfoliative cheilitis that responded to treatment with a standardized topical preparation of Calendula officinalis L.. The patient, as you did, had used many other medications before. Of course it does not mean you are gone have success using it too. We know that our support is part of the treatment too. He was really dependent on his mother, although he was already 18 years old. And we talked about this questions with both. So, stress is something that we are all exposed. We have to find ways to deal with it. Meditation, walking in green areas, exercise... We can not forget that we must consider the person. I like to ask the patient how are all parts of his/her life; like: mental, physical, spiritual, sexual, social, emotional, familiar, work..

See the attached figure (taniart.wordpress.com/tag/maslow/) from Maslow's hierarchy of needs

For you I would ask to test thyroid hormones.

Finally, I am not offend. I no nothing about images and about digital manipulation. We have his files and some from other patients who had good results using Calendula.

You know, it its very difficult to publish case reports, but this one has brought a lot of interest from people that have the same condition. It was a surprise. The last one is a lette from an England girl that suffers wih exfoliative cheilitis. She wants to use the same we have here, because she has read that Calendula plant in Brazil may have different properties.

Wait to hear from you.

Good luck!

Janete

[I have been tested for thyroid hormones and the result did not show anything unusual]

Calendula Ointment 9% Trial

About two month ago I found the fairly new case report Topical Calendula officinalis L. successfully treated exfoliative cheilitis: a case report (published november 2009), and I started this new treatment trial on mars 11 with a calendula ointment 9%. I use the ointment several times a day, whenever my lips begin to feel dry.

The Case report

According to the case report "topical Calendula officinalis ointment 10% has successfully cleared the condition", in just 15 days. The article looks professional and is well written. It is also published on PubMed (National Library of Medicine's medline and pre-medline database) which gives it some credibility. I talked to my doctor about it however and she said that one documented case rarely indicates a significant result. She also said that Calendula is not used in any medication you will find in a pharmacy or prescribed by a doctor. In lack of other options she thought I could give it a go anyway.

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 don't know the reason for this, but instead of speculating about it I am just going to try the treatment so I can cross it off.

The Calendula ointment

The ointment used in the report was a "topical Calendula officinalis ointment 10%, a preparation done as per Pharmacopoeia (1064)". 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." 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).

The ointment I use is called Maria Trebens Calendula Ointment and I found it at a local health store. It consists of calendula and animal fat (pig fat), that's it. According to the retailer (which I spoke to) it's 10% calendula. However the ingredients list says 9 grams, which is 9% of 100 grams. 1% should not be a big deal any way. 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). The ointment is yellow, medium thick and melts quickly on your lips. The sensation is very similar to olive oil.

Lips Status before starting the treatment

My lips have been behaving pretty much the same as the last couple of months. They get dry, the lower lip peel, the skin underneath has been a different variation of "raw" (from mild to very raw – no blod though). The skin flakes maybe have become a little thinner nowadays compared to how they were 6 months ago. I'm off the Valtrex pills since the beginning of the year and have not noticed any change from that. I have only used my bees vax lip balm to moisturize my lips.

I will make another update in 1-3 weeks. Stay tuned, and stay strong people.

Lips before starting trial.

Facebook Group is Growing

Since january 3 fifteen more people have joined, and the group is now up to 28 members from around the world. A big welcome to you all!

Purpose of the Group

The group is secret and will not be visible on your Facebook profile page. 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. 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. This is the most important purpose of the group. Chatting is of course ok!

How to join?

Send a friend request (not just a message!) with a message to my Facebook Profile and I'll send an invitation back to you. Due to Facebook's configuration I can only invite you if you are on my list of friends.

Protopic 0,1% Trial – Postmortem

This will be a very short summary of my 21 day trial with Protopic 0,1% (which ended january 10, 2010). I applied the cream two times a day, in the morning and before going to bed.

Did it help?

I have not noticed any improvement, my condition is pretty much the same as before. I write this two months after I ended the trial and my lips are not better nor worse than before.

Side Effects?

I have not experienced any side effects. The only thing I noticed was that for a couple of days I got a new fordyce spot on my upper lip, which looked a bit red. It disappeared after a couple of days, came back a month later and then disappeared again. It's not possible to say whether this was linked to the Protopic or not.

What's next?

After discovering the fairly new case report Topical Calendula officinalis L. successfully treated exfoliative cheilitis: a case report (published in november 2009) I will do a trial with a calendula ointment.

Protopic Trial- Round 2

I had a phone conversation with my doctor on 21 december last year and since I had no results with Protopic 0,03% she decided I should boost the percentage: I am now doing a three week trial with Protopic 0,1%. I apply a thin layer of cream on the affected areas on my lips two times a day (mornings and before going to bed).

Day 1-14 Summary

So far nothing have happened, either good or bad. No improvement, no side effects. The cream feels like vaseline/petroleum jelly on my lips. I'm still eating 500 mg Valtrex per day, so maybe that is countering some of the known side effects (like various forms of herpes simplex viruses).

My peeling cycle is pretty much the same as stated in the Protopic 0,03% Trial post.

One more week to go.

PS. I hope you all had a great holiday and New Year!

Protopic 0,03% Trial - Day 39 Postmortem

This is the summary of my trial with Protopic 0.03%. I have been using it two times a day for 39 days.

Have it helped?

I have not noticed any significant improvement. In the beginning I experienced that the skin underneath the flakes was less raw than before, but now I'm not sure that was due to any effect of the Protopic (during this trial the skin's "rawness" have varied from peel to peel).

Side Effects?

I have not noticed any side effects during this trial, except for a slight numbness and a tingling feeling on two different occasions the first week. Possible also that the lower border on the lower lip have been a little more red than it was before.

The Next Step

After a phone conversation with my doctor I am currently doing a three week trial with Protopic 0.1%. Read more about that in the Protopic Trial - Round 2 post.

Facebook Group Goes Secret

As an experiment to attract more members to the Exfoliative Chelitis Facebook Group I have now made it secret. This means it will not show up on your profile information page. I discussed the pros and cons of a secret group in this thread.

Purpose of the Group

The main purpose of the group is not necessarily to chat but to get an idea of how many of us there are in the world - right now - dealing with Exfoliative Cheilitis. Are we 25? 250? More? 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. This is the most important purpose of the group.

How to join?

Send a friend request with a message to my Facebook Profile and I'll send an invitation back to you. Due to Facebook's configuration I can only invite you if you are on my list of friends.

Right now there are eight brave members in the group from at least four different countries. But there is room for more - so come on people, join! :)

Update January 3 2010

To make the group secret was apparently a wise choice: The group is now up to 13 members. Thank you everybody!

Protopic 0,03% Trial - Day 1-25 Summary

About three weeks ago I started a Protopic 0.03% (topical tacrolimus) treatment prescribed by my doctor. I have been rubbing a thin layer of cream on the affected areas of my lips twice a day (in morning and before going to bed).

Have it helped?

I have not noticed any significant improvement so far. The only thing I have noticed is that the skin underneath the peeling skin might be less raw than before.

Side effects?

I was very hesitant to try Protopic as I wrote in this post. Luckily enough I have not been noticing any of the scary side effects (not even the very common burning sensation). On day 3 my lip felt slightly numb though, and on day 5 I felt a ticklish sensation on my lip when touching it with a cotton swap. Other than that, nothing.

Current peeling cycle

My current peeling cycle looks like this: the skin builds up like before over the course of 1-3 days. On the forth day I can usually peel everything off without too much force. On day 5 and 6 my lips look their best. Day 7 it all starts over again. Sometimes this cycle differ a little.

I have not got any treatment time limit so I will have to book a phone meeting with my doctor and ask. Until then I will continue using Protopic.

Decent day.

Not so good day.

Good day.

Exfoliative Cheilitis Biopsy Result

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. cheilitis.

The medical doctor told me she had read up on the few articles out there and also discussed treatments with collegues. She advised me to use a moisturizer (vaseline) and try Protopic 0,03% (an antiinflammatory immunosuppressant cream).

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. All in all there will be none. No more appointments, no evaluation of the treatment, no further tests. 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. Basically she told me "we can't just do random test in order to find anomalies, and there is not enough people with your condition to initiate any research".

I understand that this is the way things go (I have studied scientific theory and experimental design in university), but it made me angry and upset anyway. She did not even ask how (or if) I would cope with this, which I felt was a little strange considering that she has just confirmed that I have a chronic condition to which there is no consistent successfull treatment (except in one documented case), and that will not be researched because to few people suffer from it. Ouch.

To use or not to use Protopic

Alot of people on the Curezone Forum have tried Protopic with different results: small improvements, worsened condition to no change whatsoever. I have not heard of anyone that was cured completely.

According to the patient information leaflet Protopic have some common (> 1%) side effects like skin irritation, rash and herpes viral infections. 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).

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. Published in: British Journal of Dermatology Volume: 151, Pages: 241-242,Year: 2004). I have not read this report myself in it's entirety but you'll find what seems to be a summary in a forum post here.

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. Second, there might be a link between Protopic and cancer. There are quite some articles online about this, just google "protopic" and "cancer". There is also a paragraph in the patient information leaflet:

"Since commercial availability a very small number of people who have used Protopic ointment have had malignancies (for example, skin or lymphoma). However, a link to Protopic® ointment treatment has not been confirmed or refuted on the available evidence so far."

Has not been confirmed OR refutated. Hm... But then again, almost everything these days is linked to cancer. I will do a trial with Protopic, I just need to prepare myself mentally and regain some energy first.

You can read the Protopic Patient Information Leaflet in it's entirety here.

Lips update

This is what my lips looks like today. There have not been any significant improvements in the last couple of weeks. If I don't do any manual peeling the skin builds up and whitens. When it eventually peels the skin underneath is raw and sensitive. The lip looks best one of two days after a peeling. For me I think the best strategy is to manually peel the skin every day or every other day, because the lip seems to become more inflammed (more red) if I let the skin build up. But I need to do some more testing before I can confirm that.

Peace and energy to you all!