Lichen planus

Posted by firelady @firelady, Sep 2, 2012

I was diagnosed about two yrs ago with lichen planus an auto imune disease they say it is very rare and not contagious yet my younger brother has it also. I have the skin lichen planus as well as oral lichen planus which affects my gums, cheeks, and tongue. It is very , very painful. I had a very large back surgery in April and I got lichen planus sores on my back as a result of the trauma from surgery my incision that is twenty inches long healed but my sores from lichen planus are still open. I don't know how to get them to heal and right now I have just developed an outbreak in my mouth. The pain is so deep in the nerves that I feel like my teeth are going to explode and I can feel my pulse under my teeth. I can't explain the pain and I am begging for someone to tell me if they found anything that helps with the pain. Also I never heard of lichen planus , what can I expect from this disease? How often will I have outbreaks? will it ever go away? Should I have my teeth pulled out or will dentures make it even worse? Not too many doctors seem to know much if anything about this auto imune disease.

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@kanaazpereira

Welcome to Connect, @mayo1234lichen. Are you able to share a few more details? Have you been diagnosed with lichen planus?

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Hi, Becky. Yes, I have been diagnosed. I have vulvar lichen planus. Being treated with betamethasone & tacroliumus. Has helped with the symptoms. I thought I had developed it on my scalp also, but it turned out to be seborrheic dermatitis. Whew. A physician had told me 20 or so years ago I had lichen planus, but the symptoms didn't start kicking up until last year. I'm 72.

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@lidnaj

Hi, Becky. Yes, I have been diagnosed. I have vulvar lichen planus. Being treated with betamethasone & tacroliumus. Has helped with the symptoms. I thought I had developed it on my scalp also, but it turned out to be seborrheic dermatitis. Whew. A physician had told me 20 or so years ago I had lichen planus, but the symptoms didn't start kicking up until last year. I'm 72.

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@lidnaj Welcome to MayoClinicConnect. We all try to help each other with our different diagnoses and share information for what works and what doesn’t.
I’m glad you’ve been diagnosed and are getting treatment for the lichen Planus. And, you say it’s working! What kind of doctor are you seeing? Your primary doctor or a specialist?

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@becsbuddy I have developed canker sores inside my mouth gums only Any suggestion to clear them up?I ask my Dr she said alot of people are getting good results from L Lysine ? Do you know of anything?

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@becsbuddy

@lidnaj Welcome to MayoClinicConnect. We all try to help each other with our different diagnoses and share information for what works and what doesn’t.
I’m glad you’ve been diagnosed and are getting treatment for the lichen Planus. And, you say it’s working! What kind of doctor are you seeing? Your primary doctor or a specialist?

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Hi, again. I was referred to a dermatologist and that dermatologist referred me to a different one who seems to do a lot of work with lichen planus.

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@lioness

@becsbuddy I have developed canker sores inside my mouth gums only Any suggestion to clear them up?I ask my Dr she said alot of people are getting good results from L Lysine ? Do you know of anything?

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@lioness sounds awful, Linda! When I had bad sores last year, the oncologist had me use a salt and baking soda rinse. 1/4 tsp each in warm water. Use like a mouth wash. Don’t swallow! Unfortunately, there’s no magic cure. Good luck! Becky

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@becsbuddy

@lioness sounds awful, Linda! When I had bad sores last year, the oncologist had me use a salt and baking soda rinse. 1/4 tsp each in warm water. Use like a mouth wash. Don’t swallow! Unfortunately, there’s no magic cure. Good luck! Becky

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@becsbuddy Thanks Becky that is what I found also along with a peroxide rinse diluted of course and honey in water . I thought you may have come across something else . Thanks. have a good night Linda

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@lioness

@becsbuddy Thanks Becky that is what I found also along with a peroxide rinse diluted of course and honey in water . I thought you may have come across something else . Thanks. have a good night Linda

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@lioness Thanks. I had a scare about the oral lichen planus, but it was a false alarm. I do hope you find something to calm the sores in your mouth, which sounds like a miserable situation. Thanks @becsbuddy for getting me in the conversation. Hope you both have a good night and rest. Linda

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@lidnaj

@lioness Thanks. I had a scare about the oral lichen planus, but it was a false alarm. I do hope you find something to calm the sores in your mouth, which sounds like a miserable situation. Thanks @becsbuddy for getting me in the conversation. Hope you both have a good night and rest. Linda

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@lidnaj It is this is the second time I have had it . From previous I do the rinse,s as Becky says and also a diluted peroxide rinse ,followed by the baking soda then honey so far today this seems to be helping . Also my throat on the one side is sore so gargling will help that . Im going to try the L Lysine the Dr told me about to see if that will help . You also rest tonight

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@lioness

@lidnaj It is this is the second time I have had it . From previous I do the rinse,s as Becky says and also a diluted peroxide rinse ,followed by the baking soda then honey so far today this seems to be helping . Also my throat on the one side is sore so gargling will help that . Im going to try the L Lysine the Dr told me about to see if that will help . You also rest tonight

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Will do, @lioness

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@lioness

@becsbuddy Thanks Becky that is what I found also along with a peroxide rinse diluted of course and honey in water . I thought you may have come across something else . Thanks. have a good night Linda

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@becsbuddy I did this for several days 3 x a day and it id much better . Baking soda and salt are miracles aren't they for so many things

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