update!!! :( 
jsl123
10 y
3,101
about to stop imuran @ end of this month... havent seen any improvenemnts what so ever.... thought they were improveing for a little bit but unfortuntaley not... still get peeling white lips when wet and frakly its not rocket Science to know if your ec is cured or not :)....
now my deem is thinking of two situations.... 1. try 3 months methotrexate as this is designed to slow cell growth and cell turn over... (compared to imuran which mainly attacks inflammation both immunosuppresent drugs but different rolls)...
2. try me on prednisole for a long period (3 months) im a little worried about this but he wants to see if it does stop or clear it up even if its temporaly it will at least be good to see it clear and know that the disease can be controlled...
also iv got my personal ointment being made by a compoud chemist... iv asked for a ointment similar to daivobet... its going to have a half strength synthetic vitamin d and also hydrocortisone... i explained to them that the daivobet is two potent for the lips so there going to weaken the amount of synthetic vitamin d and also put a moisturizeing base in it so its easy to apply to the lips...
im really confused as to what exactly ec is now... i was quite convinced that it was some form of dermatitis or eczema but maybe im wrong as i would think the imuran would clear it.... so now maybe im going to tackle the psoarsis side of thinks would methotrexate and vitamin d ointments... to tackle the cell turn over... as before i thought tackleing the inflammation would clear it... who knows but im really dissapointed and frustrated! i just want my life back!
also iv applied for a clinical trial with the drug Dupilumab waiting for further responses.... iv read plenty of good reports from a wide variety of diseases it clears from dermatitis to astma to psoriosis to athritis to allergic diseases.. so see what happens....
if anybody has tried methotrexate or has any questions ill try to answer if not ill speak to you guys when ever! i dont come on forum much every thing is dead regarding treatments and im sick of the same shit conversations and post that lead to nothing.... if anybody is doing different things or seeing success please share....
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- Re: update!!! :( ihopethishelps
10 y
3,282
This is a reply to # 2,139,680Hey JSL, sorry to hear you're still suffering so much from this. By chance, do you have a beard? I recently decided to go clean shaven after my deem decided, considering my previous history of failed treatments, this may actually be a case of Seborrheic Dermatitis . It's basically dandruff caused by a reaction to a usually "normal" fungus that lives on the skin. Anyway, she gave me Nizoral 2% shampoo so I've been using that 3-4 times a week, once a day, along with shaving more often (every other day). Other than that, I moisturize with whatever and follow the standard moist healing procedure. I also use Desonate aka Desonide sometimes before bed. I tried anti fungals on the lips and that didn't work. Perhaps I was never treating the source in the first place. I've seen a good deal of improvement even though it's really cold where I am right now. Also, I find it curious that my EC started up when my beard started to really grow in thick about 4 years ago. Perhaps hormones play into this as well seeing as the demographic by and large on this site tends to show a pattern of young adult males. It's all speculation, but at least it's something. I don't come on the boards much as you may have noticed, but it sucks seeing some of you guys still battling so hard. Good luck.
- Re: update!!! :( ryan34
10 y
2,942
This is a reply to # 2,139,680your personal ointment sounds interesting. can anyone have such an ointment made?
I tried Calcipotriol (daivobet) and after a week of use the corners of my lips became extremely red and started to peel, not the same as ec but more painful, after a few days without using it they returned back to normal. I was planning to start using it again every couple days (rather than 2x/day like before) and seeing if it would help, but your idea is much better - I just dont know if I can find a pharmacist willing to do that for me.
also, can you tell me exactly what you are mixing it with?
I think it would cool to mix it with a mild steroid + moisterizer like bepanthen, or even better with epiceram, but again i dont know how to go about doing it
- Re: update!!! :( danielxmiller
10 y
3,216
This is a reply to # 2,139,680Hey jsl! Just be careful with the cream you are having made, if I remember correctly, synthetic Vitamin D is what is used with a lot of Acne clearing products (such as Accutane, which a lot of people got EC from) I could be wrong, but I'm pretty sure I'm not, so I just wanted to tell you to be careful with it.
- Re: update!!! :( longterm
10 y
2,903
This is a reply to # 2,139,680From what I read these medications work for some, but not others even if you have the same skin condition. My recent dna test showed many medications that will not work for me.
If anyone suspects this is related to dandruff, you could try zinc cream or zinc supplements (the daily recommended dose is low so do not overdo it).- Re: update!!! :( jle1987
10 y
2,960
This is a reply to # 2,139,732Accutane and similar products are derivatives of synthetic vitamin A. Dovonex or Daivobet are vitamin D derivatives, similar to what your body produces from the sun, which regulates skin cell turnover. Thats why your increased exposure to the sun helped cure you Daniel.
- Re: update!!! :( longterm
10 y
2,901
This is a reply to # 2,139,794I strongly agree that the sun was a major factor in the healing of Daniel's lips. I just wonder if once someone gets lots of sun to regulate skin cell turnover...if it is permanent or if one needs to increase vitamin D level again through the sun? I know that lots of sun in the summer can store vitamin D through the winter, but eventually it needs to be replenished. I read on here that someone's lips were healed by taking a high dose of vitamin D...I think it was 12,000IU per day, which is high but not in the danger zone. There are also stories of how people's lips improved while on vacation. Perhaps they laid out in sun on beach most of the week.
- Re: update!!! :( jle1987
10 y
2,862
This is a reply to # 2,139,798From what I recall watching Daniel's vids, he noted that if he did not get adequate amounts of sun after a couple of days he would get slight buildup. This led me to believe that his exposure to the sun was helping create vitamin D and therefore regulating cell turnover. This would make sense because Psoriasis and eczema sufferers have similar experiences. And even Daniel himself said that on a trip to the Grand Canyon, I believe, his friend's Psoriasis cleared up while being exposed to the sun all day. I personally believe for most of us, EC is related to or shares common traits of psoriasis, eczema and other skin related conditions.
- Re: update!!! :( jsl123
10 y
2,870
This is a reply to # 2,139,840ihopethishelps great theory.... i struggle with sebbrohic dermatitis on my moustache area... read my previous post... i now dont let my beird grow to much but maybe i will try clean shaveing more often at current state i shave with electirc shaver 2 times a week... might step it upto 3 times a week.... also maybe lees diet is why it works as people with sebrohic dermatitis have great results from similar diets.. i plan on doing mosit treatment sometime this year....
ryan yes i had the same issue... try only useing it once a day... what you need to do is try put a pea size amount on your finger and also half a pea size amount of vaseline on your finger and gently mix them together then apply to lips... this will weaken the ointment... im trying to cut the amount of vitamin d down so its not as irritating.. also iv just asked for a mild amount of hydroctisone to be added... some chemist do compound mixing call a few places and ask if any in your aera do it...
dan... vitamin d's are used for psoriosis... accutane has vitamin a
im keen on tackleing the psoriosis path... but also im really thinking about smashing a serious diet for a long period 6 months last time i only did it for a short period... i think methotrexate is best then at least i can rule out immunosuppresents... peace!- Re: update!!! :( ecowner
10 y
3,078
R Educational
This is a reply to # 2,139,887about Seborrheic Dermatitis been said that some lack of b vitamins like b2 b6 biotin, can cause that.
b2 mentioned in related to chilitis.
homocystein test can show you if you deficient in b vitamins.
MTHFR gene Mutations can cause your body not to be able using b vitamins properly. tests my show you are not deficient in b vitamins, but it is not correct if you have mthfr mutation and then your body can't make use of the b vitamins which means you deficent in them.
the soulution from what i read is taking coanzymed forms of the b vitamins.
- Re: update!!! :( sirpreis
10 y
2,855
This is a reply to # 2,139,973I do think that it's a really posibility that EC is a form of Seborrheic Dermatitis at least for some of use. I also have it on my sculp and have for a few years. The area around my lips also builds up and even crusts, even down to almost my chin, so last year I used a shampoo used for sculp SD on that area, and it got better for a while. I'm not sure if it was just the shampoo cleaning the area and therefore getting rid of build up skin, but it may just have been the ingredient helping.
Maybe in a few months or so, when "moist healing" hasn't shown any progress, I might try using it on my lips as well. - Re: update!!! :( longterm
10 y
2,871
This is a reply to # 2,139,973"World's healthiest foods rich in vitamin D-
wild salmon (265%)
sardines (44%)
cow's milk (16%)
eggs (7%)
shiitake mushrooms (4%)"
Cod liver oil supplement may be best option since it has 2217 IU of vitamin D.- Re: update!!! :( jsl123
10 y
2,704
This is a reply to # 2,140,022sirpies as silly as it sounds the shampoo might be worth trying!!!! let us know if you give it ago! have you ever tried a strict diet???
- Re: update!!! :( sirpreis
10 y
2,741
This is a reply to # 2,140,141I'll definitely try it, but not just yet.
I had a rather strict diet last year (remember, you once said that I was on a crazy strict diet or something like that). I also quit dairy for about two months, and gluten also for about two months. As far as I could tell there wasn't any difference regarding my condition. Either I was still on the wrong diet or wasn't on it long enough. Now I'm back to eating more meat again (far less then before EC still), and also some more not so healthy stuff. But still a lot of fresh fruit, vegetables, whole grains instead of white bread stuff, etc.
- Re: update!!! :( sirpreis
10 y
2,741
- Re: update!!! :( jsl123
10 y
2,704
- Re: update!!! :( sirpreis
10 y
2,855
- Re: update!!! :( ecowner
10 y
3,078
R Educational
- Re: update!!! :( jsl123
10 y
2,870
- Re: update!!! :( jle1987
10 y
2,862
- Re: update!!! :( longterm
10 y
2,901
- Re: update!!! :( jle1987
10 y
2,960
- Re: update!!! :( ihopethishelps
10 y
3,282
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