Lichen Planus Support Group

yes. it does affect your lifestyle, I cant do much walking, if I know I am going to walk much I always put a bit of betnovate inside beforehand it does form some protection, I know its not good keep using these medications, but betnovate ointment not the cream is my only relief, I am 70 years old and will do whatever to save the pain and soreness, if nothing else works, nice to talk to you

hello everyone, has anyone found any medication to help with the stinging of the tongue and mouth, now pulmicort has been taken off the market my LP has got so much worse and is stinging all the time I cant find anything to help especially in the night when the insides of my mouth stick to the gums, thanks

I haven't found anything that works but I just ordered lichnotin because I'm pretty desperate. I will report back.

thanks, look forward to what you think of it I am back to drinking through a straw again cant stand even water touching the sides of my mouth

I have been there. Right now the lips are calming down but the inside of my mouth not to mention the vaginal area is a mess . Sex has been out of the question for years. Of all my problems the lips are the worse.

do you find the doctors you speak to just dont understand, there seems to be no one out there with any real understanding of what it is its near to 30 years since mine started and it took nearly 10 years for the hospital to confirm what it was, I had so many biopsies I have said no more as everywhere they took one from never really healed, I am 70 now and am giving up ever getting rid of it

dont give up, doctors just don't know what causes it or how to treat it. technology is progressing all along. i am optimistic there is a cure out there (or out there in the future) somewhere. there are actually many autoimmune diseases which doctors do not understand so you are not alone by any means. i take medicine for seizures which fortunately is effective. many people have seizures and they are another mystery to doctors. the bad thing about our problem is that there is no topical product which is effective for reducing the symptoms in mucousal tissue. we really need to find something we can take internally to reduce the systemic problem as opposed to treating the symptoms. lets be a team to share info.

another frustration as i go to a different doctor is that they want to retry what has been tried before. i won't stand for that anymore. also, i'm with you, slicing off tissue (even for biopsies) when your tissue is eroding all by itself is unacceptable. (just let me accept the risk of misdiagnosis, let me accept the risk of cancer, whatever.) i have to try homeopathy for a switch. i have been to that type of doctor before but i think she just didn't have the answer and was not professional enough to admit it. as much as i hate it, i do appreciate when a doctor says i just don't know what else to try as opposed to offering false hope and added expense. oops do you see optimism there?

hello again, I agree completely with what you have said, but not all doctors are sympathetic, one told me "its only lichen planus it will go, but at least it wont kill you" I could have screamed at him. I dont really understand the homeopathy line of thought, as I dont know of any success stories with it, but its worth a try,

obviously that doctor has no clue. i feel your pain.