healing thats very disappointing! i presume when she was talking about the 10% she was talking about the trials! as if you don't have more then 10% covered in eczema they do not allow you to go in the trials! fda has fast tracked dupilumab and it should be available to public by end of 2016! so it not to far away! i was really hoping she would have some good ideas! Theres nothing worse then going to a dermatologist or specialist and they push you out the door in less then 10 minutes!
I'm still very comfortable with the idea that ec is just eczema of the lips. reason why its difficult to cure or treat. for some reason its a stubborn form and doesn't respond to standard topical treatments. If you slow or shut down the immune system it can/has put the symptoms in remission reason why daniki and a few people with prednisone get such good results and see clearing in there symptoms unfortunately it doesn't respond for some people. which is a huge shame! I'm so surprised there are people on here that complain and still haven't tried imuran or any of the immunosuppressive drugs.
unfortunately our condition isn't taken seriously by dermatologist because its so rare and not many have really treated it and cured it. And yes for some lucky people it can just disappear as quick as it came. similar to people with hand eczema it can just all of a sudden come and also go but at the same time can be chronic for some people!
anyways thanks for sharing healing. I'm seeing a dermatologist that is running a few biological trials for inflammatory skin conditions and i also think dupilumab is one of them so it will at leafs be good to be part of a clinic that is on the front line of new treatment!
i forgot to mention also healing did you show her any pictures of ec when there really bad or in there original state? because your lips are 95% better so she probably didn't take the condition very seriously! i always take pictures in so the doctors can see what there like when i don't rip/peel them off and can really get a picture of the severity and pain of the condition!
anyways good luck all! and for the newbies! please check out danikis posts! she 100% cleared her symptoms through imuran which is a immunosuppresive drug! good luck all!