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Oral Lichen Planus

Posted , 18 users are following.

ckitefly
ckitefly

I think I have Oral Lichen Planus but I can't get a doctor to confirm it.  I have had mouth sores in my check area since 2009 and now my gums are very red and inflammed and have been told that I have white lines on my inside cheek area.  When I go to a dentis to have my teeth cleaned, I am always turned away because they don't like the looks of my mouth sores.  In 2013 I had doctor swab my mouth and send for testing and also did blood work but was told nothing showed up. I think she was looking for bacterial effection.  In the mean time, I continue with a very sore mouth.

I have a hard time eating anything because the sores are next to my bottom back teeth so eating irritates the sores a lot at night I sometimes bite the area with sores due to swelling so they pretty much never heal. 

I recently went to a new dentist and she too wouldn't work on my teeth but she gave me details as to her concerns and told me to get checked for an Auto Immune disorder.  I have since been to a doctor and had blood taken to check for that and then they sent me to  ENT.  He mentioned Oral Lichen Planus which was the first time I have heard of it.  He wants to do a biopsy and then he mentioned a steriod rinse. 

I also researched OLP and I have all the symptoms listed so I just don't understand how going to doctors since 2010 about the mouth sores, no one can figure it out?  Am I finally heading in the right directions for diagnosis?  I scares me that it has been left un treated for 5 years when I read that sometimes those with OPL can lead to mouth cancer.  Any suggestions would be greatly appreciated.

0 likes, 53 replies

53 Replies

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  • karen41728
    karen41728 ckitefly

    Posted

    Hi ckitefly

    Do you have lichen planus anywhere else like skin or vulva only I have it and I know it can affect other areas.

    How old are you just wondered if it started with the menopause and any abnormal cells after a smear test

    Please I would be interested

    Take care Xx

    • ckitefly
      ckitefly karen41728

      Posted

      Hi Karen

      I am 47 and my sores started when I was 38.  I don't have any other issued besides the mouth sores and all smear tests have come back good up to last year.  I'm getting a biopsy of my mouth at the end of the month so we can confirm OLP.  Some auto immune blood test came back negative ( Lupus etc.) so the biopsy is the next step.

      I can't wait because I want answers.

    • karen41728
      karen41728 ckitefly

      Posted

      Thanks for getting back to me what happened over your smear did you have any treatment xx
    • ckitefly
      ckitefly karen41728

      Posted

      All my pap smears have been good in the past.  The only thing that the doctors are doing now is the biopsy which is later this month.  I have done the steriod mouth rinse which helped for the most part. It took the sores away on the right side but not all the way on the left and the 10 days are up and the right is coming back.  Mouth sores are my only problem at this time.  However, I have always had crazy hormone issues all my life and then even took infertility injections to have my now 17 year old so not sure if any of that could have played a factor into the now issues.  I know I am also a very stressed person which I was told can be a cause. 
  • ckitefly
    ckitefly

    Posted

    So right now my OLP is really bad.  Has anyone had same issues I have right now and if so, what treatment did you get or suggest.  My ulcers in back are very inflamed in the back of my mouth ( behind back molars) and along the gums line on the side of my mouth ( inner cheek below teeth).  Monday they started hurting really bad and now infected to the point that I have facial swelling,  facial pain fever and dizziness.  Went to the doctor and was given a high dose of antibiotics but oh my god the pain so so bad that I can't even drink water without being in pain.

    I've had this since 2008 and this is the worst I have ever had.  Any suggestions would be great appreciated because since starting antibiotics, fever is persisting and dizziness started.

    Thank you.  So desperate right now.

    • gillme1955_UK
      gillme1955_UK ckitefly

      Posted

      Sorry your suffering so much! OLP is so painful at times. I was prescribed and use Flixonase nasule drops as a mouthwash and it’s the only thing that has worked for me. This was originally prescribed by Liverpool Dental Hospital and I have it on repeat prescription from my GP. The individual capsule is diluted with 10 mls of water up to three times a day for 3 minutes before spitting out. 

      Hope this helps you!! 

      Kind regards,

      Gill

    • ckitefly
      ckitefly gillme1955_UK

      Posted

      Have you ever had them get infected?  That is what is worrying me the most because ya they hurt and we learn to deal and what to eat or not eat but i have never had an infection.

       

    • Cath201
      Cath201 ckitefly

      Posted

      How are you now, I too have suffered LP (oral and genital) for many years. Currently going through a bad patch due to having a heavy cold which seems to set it off.  I'm rinsing with prednisolene 3 times daily and placing a small amount of dermovate ointment on the worse area on the inside of my cheek, although may ask to try Flixonase as gilme below suggests. 

      I'm convinced my LP was down to a very stressful event in my life.

  • rebecca83980
    rebecca83980 ckitefly

    Posted

    I am a dental hygienist with Oral erosive lichen planus. The general Dentist office cannot offer much help. Dermatologist is your best bet to get started. Mine has progressively gotten worse over the 9 years,  I would seek treatment with a dermatologist. and be proactive in your care.  It can become worse if left unchecked.

    I recently tried the Closys mouthrinses, no mint flavoring which is helpful, helps raise the mouth PH .The toothpaste is minty, but it does not contain the surfactant sodium lauryl sulfate which irritates mouth sores (canker) and LLP.  Best Wishes

  • Sasr24
    Sasr24 ckitefly

    Posted

    I live in Tennessee, and I've had LP/OlP for about four years.  It took two years for me to find someone to diagnose it.  The dentist didn't know what it was.  The GP treated me for gingivitis.  Finally a dermatologist did a biopsy and it came back OLP.  He put me on Mycophenolate.  It is a drug used to slow the immune system.   While you have to be monitored because it can increase your chances of getting other illnesses, it has proven to be a life saver for me.  I use childrens toothpaste, and I have to be careful the temperature of food isn't too hot, but for the most part, my OLP doesn't bother me.  Ocassionally, I have flareups, but they are short-lived.

    I'm sorry you and everyone else is suffering.  I wish the medical industry would do more for us.  My best to all of you.  Take care.

  • SandraS
    SandraS ckitefly

    Posted

    Cancer is rare, but watch for lichen symptoms in other areas. It can be found in any area with mucousa, or on skin. I have more than one form of lichen.
  • Satpreet
    Satpreet ckitefly

    Posted

    Hi iv had oral lichen planus for over a year very painful condition I was advised by my consultant to have all my silver fillings replaced with whit fillings so I did now my mouth is much better the silver fillings was causing it I hope this helps

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