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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I have been.

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@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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Hello everyone. I am new here and I am trying to find out if the Lichens puts me at a higher risk with the COVID? I am a Disabled Vet., and I was told by my VA Dr. that he did not feel that I was a high risk @ my job, which have had a couple of people test Positive. They are giving Admin leave to those whom are at high risk but I need a DR. note, funny and adult needing a note to be excused Lol. Or I would have to use my own accrued time.

Thanks Mark

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@markymark911

Hello everyone. I am new here and I am trying to find out if the Lichens puts me at a higher risk with the COVID? I am a Disabled Vet., and I was told by my VA Dr. that he did not feel that I was a high risk @ my job, which have had a couple of people test Positive. They are giving Admin leave to those whom are at high risk but I need a DR. note, funny and adult needing a note to be excused Lol. Or I would have to use my own accrued time.

Thanks Mark

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@markymark911 It’s nice to hear from a vet, but hopefully one whose autoimmune condition isn’t too bad. How long have you had lichen Planus and how is it treated? I, too, have an AD and it’s treated with prednisone and a twice yearly “chemo” infusion, so I’m somewhat compromised. You’d rather go to work, it’s not much fun staying home!

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@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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I was diagnosed with LP in 2002 with burning mouth and sores in my mouth and spots all over my hands and arms. I have never known any who even heard of LP. Mine was caused from Prilosec meds. I have several medicine and food sensitivities. My dermatologist had a nurse call me by phone and tell me of the diagnosis and did not offer any treatment. I read about it on line at Mayo Clinic. I immediately stopped eating any preservatives food additives and stopped hair permanents. Ate natural foods. If took over two years to clear. Would get an occasional breakout bubble in the lining of the mouth. I recently had cataract surgery and took an inflammation medications for two months. My face and mouth broke out again. I was sent to an oral surgeon to check for cancer. He said it was my LP flaring up. I am still on my clean food eating and meditating to keep stress down.

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@ema12

I was diagnosed with LP in 2002 with burning mouth and sores in my mouth and spots all over my hands and arms. I have never known any who even heard of LP. Mine was caused from Prilosec meds. I have several medicine and food sensitivities. My dermatologist had a nurse call me by phone and tell me of the diagnosis and did not offer any treatment. I read about it on line at Mayo Clinic. I immediately stopped eating any preservatives food additives and stopped hair permanents. Ate natural foods. If took over two years to clear. Would get an occasional breakout bubble in the lining of the mouth. I recently had cataract surgery and took an inflammation medications for two months. My face and mouth broke out again. I was sent to an oral surgeon to check for cancer. He said it was my LP flaring up. I am still on my clean food eating and meditating to keep stress down.

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Wow, @ema12 ! Amazing that you were able to make that drastic change to non-processed foods. I thought I had the oral LP but it turned out to be a false alarm (at least my dermatologist said so -- and she's very good on my vaginal). I've been getting perms off and on. Will lay off that if it's a hazard. Meditation is wonderful for many reasons. Cheers to your success and hope it continues. Linda

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@lidnaj

Wow, @ema12 ! Amazing that you were able to make that drastic change to non-processed foods. I thought I had the oral LP but it turned out to be a false alarm (at least my dermatologist said so -- and she's very good on my vaginal). I've been getting perms off and on. Will lay off that if it's a hazard. Meditation is wonderful for many reasons. Cheers to your success and hope it continues. Linda

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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

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@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

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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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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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