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.

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.

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.

No Lip Balm Experiment Postmortem

On monday evening last week I decided to end my No Lip Balm Experiment, and I used a lip balm again for the first time in 62 days (I'm on day 6 now). Here is a short summary of the experiment:

What happened to my lips during this time?

When I stopped using a lip balm the skin on my lower lip soon turned into big white crusts, which fell of in 4-10 day cycles. The skin underneath usually looked and felt pretty normal, although a little red and sensitive. In the beginning there were more smaller crusts forming on my lip, but after a couple of weeks there was usually just two big ones, on the left and right side, which fell of at different times (like there was different peeling cycles for the right and left side of my lip). The peeling cycle seemed to slow down a little bit after a couple of weeks, but did not stop entirely.

I did not notice any significant improvement really when I compared the pictures from the first weeks with pictures from last week. The crusts were not so big and seemed a little thinner in the last weeks but that was probably because I trimmed them on a daily basis so they never got to build up.

One surprise though was that my lips turned out to be much more elastic than I thought they would be.

Stress and Mental health

The experiment was extremely challenging. I was able to maintain a pretty stable mood during the whole thing but it always felt like I was walking on a tight rope above a bottomless black pit of madness and depression. I did my best to keep calm by tuning out my feelings of frustration and instead focusing on the good things in my life. That strategy worked pretty well. Acceptance training and practicing openness about my condition also worked. Same for spending time with family and friends, and keeping busy with things I like doing. But it was very, very tough time for me.

I will probably write a longer post on my strategies for maintaining a balanced mood and coping with stress in the future

Reasons for ending the experiment

The main reason was that I did not see and feel any significant improvement, but I also choose to tune into my feelings about this and realized I did not want to have to deal with the stress of a chapped and crusty lower lip anymore, when a option was available (lip balm). I felt that I had really stretched my comfort zone during these 62 days, but I was not so sure I could go on anymore (just to see what would happen) and maintain my mental health. I suddenly felt extremely tired and done with the whole thing.

Conclusion

In my case, 62 days without a lip balm did not result in any significant improvement for my lips. There is always a possibility that 62 days was too short a time, and that other people will get other results from a similar test.

If you have any questions about my experiment just send me an email. Even though the experiment is over, I will continue blogging about my exfoliative cheilitis.

No Lip Balm Experiment - Day 40-60

No Lip Balm Experiment - Day 61

Lip Status

Today my lips does not look as good as in the post two days ago, like expected. But considering I have not used any kind of moisturizer for 61 days (I can't believe it's been that long), they don't look too bad either. It's really the vermillion border that is most screwed up; the crusts grow thicker and hard there and is more yellowish in color. Further down the skin is much more thinner and almost a transparent white.

Experiment Status

It's hard to tell if the experiment is a positive thing or not for my lip. I don't seem to get so big crusts anymore (as in the beginning) but that could be to the fact that I'm trimming a little bit almost everyday. The lips are surprisingly elastic. I don't think they will turn any more worse than this at least. I'm still hesitant to begin to use a lip balm again; a part of me want to go back to lip balm which would hopefully restore my lips even more, another part of me isn't so sure. I keep thinking "I've already done 61 days, the lips are not getting worse, for the moment I can manage the stress, what if the peeling would slow down even more..." I have to take this one day at a time. Maybe I go back tomorrow, maybe I won't.

Uploading clips of my lips still feels weird - even after 61 days.

Setup Status

I'm not noticing any result from the borage oil (I've been on it for about a month) so I will stop taken that for now.

Community Status

Another swede contacted me today on Facebook. Now we're three guys and one gal - great! Still no members in the Facebook club though, which does not surprise me. People have been telling me they are not ready to join, they're busy dealing with the stress of their peeling lips. But if people decided to join it would be an easy way to see how many fellow EC'ers we are in the world right now.

No Lip Balm Experiment - Day 59

For the moment my lips look pretty good; they are a little chapped but I only have one white crust on the right side. I still have my sense of touch on the left side even though it peeled three days ago.

On days like this I feel like I can just keep on going, but I also know that my lips nowadays can change status in less than two days -from good to bad to downright ugly. I have been thinking about going back to using a lip balm after day 60 (tomorrow that is), but I have not decided yet. What do you guys think?

No Lip Balm Experiment - Day 56

Today my lips look okay, a little chapped. It's in the beginning of a new peeling cycle and I have trimmed some of the excess skin. The tool I use for this is a small scissor (as seen in the picture), although it's a bit too big for the delicate precision work that trimming lips is. It is difficult to trim small part of a crust without ripping the whole thing away. I need something more sharp and precise. Anyone got any tips?

It's interestingly easy to get used to such a surreal activity as lip trimming. In the morning I'm like "go to bathroom, brush my teeth, trim my lips ho hum..." I find it quite amusing that I trim my lips more often than my facial hair. :)

No Lip Balm Experiment - Day 50

Day 50. Wow. The 2-3 layers of skin on my right side is merging into one thicker crust, I'll see if I can trim that tomorrow. The left side is slowly turning whiter but still looks pretty alright.

I've been telling more friends about my condition, visiting some of them for the first time with my lips in this state. In some ways it feels a lot like coming out as gay: the initial nervousness, the feeling of letting go and showing the real you without knowing how they will react, the explaining part, and the final feeling of freedom and being accepted for who you are.

I've realized that the more open I am about this, the easier it is to handle.

This was not the approach I took to the first time around 2003; then I basically did not tell any of my friends and became a depressed lonely, nervous homebody as a result. It may feel weird, unnecessary or even scary to tell people about this, but in the end it will make you feel so much better and take away a lot of stress. Again: people don't care.

On saturday I will attend my cousins wedding. I phoned him today to chat and tell him about my condition (sooner rather then later). Minutes later his fiancée called me to get a more detailed description about it. I think neither or them really understood what I was trying to explain before they saw my blog (Hi Jonas and Jenny, see you saturday :)

No Lip Balm Experiment - Day 48

I'm still trimming. For the moment I get these results: 1) the skin seem to build up into much thinner layers, and 2) instead of one thick crust there is now 2-3 very thin layers on top of each other. At least this goes for the right side. My left side actually looks pretty normal for the moment, even though it's going to peel sooner or later (I know because I'm loosing my sense of touch there).

I have also been contacted by fellow swede number two. Now we're at least three guys here. Is there any more?

For the moment I'm visiting one of my sisters. Socializing with family and friends can really help you take your mind off your troubles – it's very hard to feel anything but happy when a one-year old toddler tries to climb you like a tree and then out of the blue says "badahba" and hugs your knee. I highly recommend it. :)

No Lip Balm Experiment - Day 45

I accidently removed the crust on the left side of the lower lip last night. The skin underneath was red but not raw. Today I did more trimming. A couple of hours later I could do some more. I only trimmed the skin that had gone completely white and was hanging loose. For the moment the skin on my lower lip seem to be build up in thin layers if you compare them a couple of weeks ago. We'll see if they stay that way. Be well you all!

No Lip Balm Experiment - Day 44

More trimming today. We'll see if it is effective in the long run.

A guy with EC from Sweden contacted me yesterday. Guess I'm not the only one here :)

No Lip Balm Experiment - Day 42

My lips feels surprisingly elastic, considering that I stopped cold using lip balms 42 days ago. I can smile without any problems for example (not always, but most of the time).

I trimmed my lips for the second time yesterday (you can see the before and after picture below, 24 hours in between). I've been a little hesitant to do that because the first time I did it resulted in a two-layer crust instead of just one. But I will start to experiment with trimming on a more regular basis now to see what the result will be.

No Lip Balm Experiment - Day 40

Status

Today my lips feels pretty normal. I trimmed the right side a little because the crust was getting really big and had pretty much peeled completely anyway. The skin underneath has already started to dry and become white. The new crusts does not seem to be so thick.

Since the start of the experiment my right side has peeled three times, my left side two times.

I have been using borage oil for the past three weeks, both eating it and applying the oil topically. According to some people this worked for them. I have not noticed any difference so far though.

Has anything happened since the start?

* When I started this experiment my lower lip hardened into several part. Now my lips harden into two whole parts, left and right.

* The middle of my lip used to split, but for the last days it has remained in one piece.

* The peeling seems to have slowed down but it is hard to really tell. Maybe it is because my lip hardens into two big crust, and it takes longer for them to peel completely.

Reflections

I really don't know where this is going. I will probably continue the experiment for one more peel but after that I don't know. It takes quite some energy to live with this and still stay in a good mood. The key is not do think about it so much, just observe.

Volunteer Work

Two week ago I really stretched my comfort zone by being a volunteer at the Stockholm Pride Festival. I had planned this for several month but I thought about dropping out every day since my lips got worse again (june 1). But I finally went through with it. Being a volunteer at this festival means social interaction with many people everyday. This year I was a "journalist" writing articles, meeting many people almost all the time every day, doing interviews, attending seminars etc. I was absolutely terrified the day before the festival started, I felt sick and dead tired. But somehow I managed to get through almost the whole week before I got a really bad cold. This is what I learned during those days:

* People don't really care about your lips. It's possible to interact with people even when your lips look bad. If you don't care, they don't care. Beside, everyone are busy with their own issues.

* Things get a lot easier if you talk about your condition, instead of trying to hide it. Before I started my volunteer week I emailed everybody in my work group telling them about my EC. It felt strange to email to people I had never met before and a little bit paranoid, but I also felt relieved. Now everybody knew about it and I did not have to explain my condition to everyone I worked with. During the week some of my fellow volunteers told me I did the right thing sending that email.

* Get busy. The more time you spend interacting with people and concentrating on tasks at hand the more your awareness about your lips will tune out. As an example, I could do three interviews in a row and completely forget about my lips. So stop thinking and just immerse yourself in whatever you are doing.

Here is a picture of me from one of the articles I wrote.

No Lip Balm Experiment - Day 25

Today I trimmed the left side just a little bit with a scissor. Most of the crusts has not begun to deattach yet though, so I will leave them as they are. The split in the middle of the lip is more visible. The right side is still in one piece. Short post today, I'm a bit low on energy. Time to hang out with my friend who is visiting me this week.

No Lip Balm Experiment - Day 24

Today my lips looked like this. One of the middle crusts fell of at lunch without me noticing it. My lower lip looks a little bit swollen, the border is a bit red (it's usually more pinkish) and feels slightly warmer than usually. Other than that, my lips feel perfectly normal actually. There is no mark from the biopsy to be seen. I can't believe it's been 24 days since I used any lip balm (I have used a lip balm several times every day for the last 5 1/2 years).

Thank you guys for all the support. I really really appreciate all the nice messages I've been receiving since I started the blog and posted the Youtube clip.

To answer some questions:

Why the experiment and online documentation?

* Collect data. I've never tried this for so long, and don't know what the result will be. According to some people (that includes cureforcurezon who made the website, and started the forum) their lips eventually got better with time. I try to not be too attached to the results though, it's easier to handle if I just observe what happens. Blogging, youtube and facebook makes it easy to document and make the results available to many people.

* Support. I wished there had been pictures or video clips on the web when I first got this 2003. I wished I could have showed them to all the doctors I went to, who either rolled their eyes and shrugged, or gave me the wrong diagnose. 2003 there was nothing, not even this forum. I didn't even know what to call my condition and I felt like a very lonely freak that first year. During the years I have googled and youtubed my symptoms, but I did not find exfoliativecheilitis.com and this forum until two months ago.

* I feel strong and calm enough to do it. Of course a part of me just want to cry, scream and smash things, but I kind of did that the whole first year. Instead I try to be like the people we see every day that gets through life in spite of their psychical, emotional or cognitive hardships. Someone pointed out that I looked kind of happy, and yes, I am rather happy. I can think and express myself, move around as I please, I have a job, my own place, food in my fridge and loving and supporting family and friends. Besides, I think you rather see me smiling instead of sobbing "why oh why cruel fate!?" from under the sheets. ;)

* The result from the biopsy will not come until late august, and with that, possible new medication/treatment. This is an opportunity to see what happens before any new medicatiion/treatment arrives.

* I can currently work from home. I may not have that opportunity in the fall.

* I've treated the symptoms for 5 1/2 years (lip balm, and gently helping the loose skin to come off), I know what kind of result that will bring.

* Give the finger to exfoliative cheilitis. You can't touch me! ;)

Reactions?

I except all sorts of reactions. We're all in the same boat here I know this condition can be extremely fruststrating and stressful, and it's not always easy to be positive when you're in the middle of the storm. I do favor encouragement.

First Exfoliative Cheilitis Clip on Youtube?

Someone's gotta be the first. This clip is about two weeks old (7 July), two days after I had a biopsi (it's the little black spot on the right side of my lower lip). Here I'm about one week into the No Lip Balm Experiment. As you can see the skin on my lower lip has started to crust and peel. I will post more clips soon.

No Lip Balm Experiment - Day 23

Quick post. 23 days ago I stopped using my lip balm and stopped to manually help the peeling on my lower lip. Today it looked like this. As you can see the right side (actually it's my left side my photo capture app is flipping it around, I'll fix this in future posts) is very crusty looking (there is at least two layers of skin here on top of each other), but they are quite loose and are beginning to detach (from the bottom up). Yesterday a big crust feel off from the left side (the right side) of my lower lip fell of (without any help from me). There was new skin underneath, a little red, but not raw. Does not hurt at all. We'll see how this will unfold.

Another thing, I've never seen a face pic of someone with exfoliative cheilitis (there are not so many pictures out there to start with), just close-ups of lips. Guess I'll be the first one to come out of the closet ;)