1. < Autoimmune Diseases

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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Erika | @erikas | Feb 5, 2021
In reply to @jlclaussen "Hello. My doctor has started me on a regime of folic acid daily except on one..." + (show)
@jlclaussen

Hello. My doctor has started me on a regime of folic acid daily except on one day in the week, only, I take 6 pills of methotrexate. So far, I feel it has helped. I don't seem to itch as much and some of the spots on my legs are drying up. I am praying that this will be totally successful. Any relief is better than nothing, however. Good luck,

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@jlclaussen Welcome back to Mayo Clinic Connect, a place to give and get support.

It sounds like you have news of success to share. Congrats that your treatment is working.

Other members like @ema12 @lidnaj @markymark911 may be able to benefit from your knowledge and experience. May I ask the process you went through to get the correct treatment?

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1 reply
jlclaussen | @jlclaussen | Feb 2, 2021
In reply to @navyblue14 "Diagnosed 2 years ago. I am 42. I really did not get a complete understanding of..." + (show)
@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

Jump to this post

Hello. My doctor has started me on a regime of folic acid daily except on one day in the week, only, I take 6 pills of methotrexate. So far, I feel it has helped. I don't seem to itch as much and some of the spots on my legs are drying up. I am praying that this will be totally successful. Any relief is better than nothing, however. Good luck,

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1 reply
ema12 | @ema12 | Jul 12, 2020
In reply to @jshdma "@firelady-- having had LP for a few years, followed by burning mouth syndrome (BMS), and seen..." + (show)
@jshdma

@firelady-- having had LP for a few years, followed by burning mouth syndrome (BMS), and seen top oral pathology experts in NYC and Boston, I can tell you that oral LP would not be improved by having teeth removed. Also, standard treatment for oral LP is steroid shots. They work, but probably not a good idea long term. Beyond that, there is nothing. Don't waste time going to doctors. BMS never goes away.

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My burning mouth did go away. My lp went into remission for about 15 years. Just went to oral surgeon for my gums. He gave me a prescription for LIDEX GEL. I am picking it up today. Fingers crossed. Just keep trying to lower stress and support your immune system. Not many people have even heard of lichen planus. I am glad I found this blog and can share ideas. Just found a lady talking about lp in slow wound healing. Told her about this blog. She also has oral lp. We are in this together.

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lidnaj | @lidnaj | May 4, 2020
In reply to @ema12 "You mentioned rosacea and I gave a friend who had it and puts the medicine metro..." + (show)
@ema12

You mentioned rosacea and I gave a friend who had it and puts the medicine metro gel on it. I have some since my breakout in face is like rose Ema. Will let you know if it helps. Sleep well.

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Great, ema12 @ema12. Much appreciated. Sweet dreams.

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ema12 | @ema12 | May 4, 2020

Oops. Have a friend who has it .....

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ema12 | @ema12 | May 4, 2020
In reply to @lidnaj "Thanks, ema12 @ema12 Good advice to have the eye surgery in stages I think. We'll have..." + (show)
@lidnaj

Thanks, ema12 @ema12 Good advice to have the eye surgery in stages I think. We'll have to see if the virus goes away in time for surgeries next year or not. Anyway, I hope we both continue to be in a place where we can live with the annoyances of LP. Take care and hugs back to you! Linda

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You mentioned rosacea and I gave a friend who had it and puts the medicine metro gel on it. I have some since my breakout in face is like rose Ema. Will let you know if it helps. Sleep well.

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lidnaj | @lidnaj | May 4, 2020

Thanks, ema12 @ema12 Good advice to have the eye surgery in stages I think. We'll have to see if the virus goes away in time for surgeries next year or not. Anyway, I hope we both continue to be in a place where we can live with the annoyances of LP. Take care and hugs back to you! Linda

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ema12 | @ema12 | May 4, 2020
In reply to @lidnaj "Hi. Guess I have cataract surgery coming up next year. Oh, joy. So far my vaginal..." + (show)
@lidnaj

Hi. Guess I have cataract surgery coming up next year. Oh, joy. So far my vaginal lichen planus has stayed under control with betamethasone and another drug, trading off morning and night. I do have dermatitis on my scalp and forehead and either rosacea or something on my face. But that's pretty minor. The oral stuff just sounds so uncomfortable. I hope you can keep it at bay. Living is stressful for a lot of folks these days and it's good you have a meditation practice to help with that. I do too, but it's not too strict. Enjoy when the calm comes and take good care. Linda

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Thank you. I found a an article on Medical News Today that lists meds that can cause LP. One is beta blockers which I take for blood pressure (I never knew that) another is inflammation meds which would have been the cataract med. If you have cataract surgery maybe you could have one eye done and see if you do fine and have other eye done later. I had no idea I would have a reaction and had eyes done back to back with great results. I now have the breakout in my face and treating with a Facial spot lighter and moisturizer. It is better. Can now cover with a cover stick and foundation. Hope yours goes into remission .Hugs and Prayers

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markymark911 | @markymark911 | May 3, 2020

Sorry you suffer with so much, I should be Grateful that the LP is all I have that is a real problem. I would imagine that your LP is very uncomfortable and can be a real problem. Sorry to hear and good luck with you surgery.

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lidnaj | @lidnaj | May 3, 2020
In reply to @ema12 "I had a hard time getting back to this site. Was directed to burning mouth syndrome...." + (show)
@ema12

I had a hard time getting back to this site. Was directed to burning mouth syndrome. Read the posts and they mentioned b12. I take vitamin and mineral supplements which includes a stress b tablet. I am still dealing with the spots all over face from drops in eye for cataract surgery and mouth rough patches. That was as far as it progressed before I was able to stop the meds. I am really trying to watch my stress level right now. It is helpful to reach out to others who have even hear about this disease. My doctor offered nothing and my dentist had me rinse my mouth several times a day. Tongue was red and coated and very sore. I did not know the disease was rare. Kind of thought okay if it is an autoimmune disease what can I do to support my immune system. Hugs and Prayers

Jump to this post

Hi. Guess I have cataract surgery coming up next year. Oh, joy. So far my vaginal lichen planus has stayed under control with betamethasone and another drug, trading off morning and night. I do have dermatitis on my scalp and forehead and either rosacea or something on my face. But that's pretty minor. The oral stuff just sounds so uncomfortable. I hope you can keep it at bay. Living is stressful for a lot of folks these days and it's good you have a meditation practice to help with that. I do too, but it's not too strict. Enjoy when the calm comes and take good care. Linda

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