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.

Interested in more discussions like this? Go to the Autoimmune Diseases group.

This my second flare up. Any suggestions.

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@lisalucier

Hello, @navyblue – welcome to Mayo Clinic Connect. The scarring you are talking about would distress me, too.

I have moved your post here to this discussion on lichen planus (LS) so you can talk with others in this existing discussion on this condition about your questions such as the kind of soap to use and whether any particular kinds of soap or other factors can flare up the lichen planus. They may also have some thoughts to share on whether folic acid pills are helpful. Please meet @becsbuddy @jlclaussen @grammlyn @dreamer38 and others here.

Have you noticed anything so far that seems to make your LS flare up?

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This is my second flare up. The first time I noticed was during nursing school, n now its just stress

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@navyblue14

Diagnosed 2 years ago. I am 42. I really did not get a complete understanding of it. I'm perfectly healthy. I did a biopsy on leg when it was first spotted. I am now having a outbreak on the fore arm, legs, around ankles, too of my foot. In to make it all bad I'm light skin in the scarring is horrible. Do any of you have suggestion on soap to use? Does certain kind flare it up? I read on things that can flare it like ibuprofen, Advil, metal fillings. I mean it just came out the blue. I have used steroid cream for 14 days it's still there n ik that can cause thinking of skin for long periods of using. Does any one know if folic acid pills make it better

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@navyblue14
Good morning. I’m so sorry you’re having these skin problems. There is just nothing worse! I don’t think I had lichen Planus but I know I had some major skin irritations. What I learned was to eliminate all Products with fragrances . Even laundry soap. It took a little while, but it has worked. I just don’t know why manufacturers think that everything has to have fragrance! Best of luck

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@becsbuddy

@navyblue14
Good morning. I’m so sorry you’re having these skin problems. There is just nothing worse! I don’t think I had lichen Planus but I know I had some major skin irritations. What I learned was to eliminate all Products with fragrances . Even laundry soap. It took a little while, but it has worked. I just don’t know why manufacturers think that everything has to have fragrance! Best of luck

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Thank you!

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@ethanmcconkey

Hi @jlclaussen and welcome to Connect. You may have noticed I moved your post to this existing discussion on lichen planus so that you can connect with others who have similar experiences. Simply click VIEW AND REPLY in your email notification to get to your post.

That must be unbearable and frustrating to be unable to find a solution to the skin disorder.

@grammlyn @maryz and @suyadugs all have mentioned lichen planus in the past and may be able to offer you support.

Back to you @jlclaussen I see that you are using doxycycline and a cream for the itching. What other treatments have you tried? Have you thought about consulting another dermatologist to see if there is a different treatment you could try?

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Ethan, do you know of any mayo clinical trials?

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

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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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