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Oral Erosive Lichen Planus

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kokkie
kokkie

I was diagnosed with Oral Erosive - Lichen Planus a year ago after two biopsies on the age of sixty.

I am positive that it was caused mainly by stress and that allergies and fungal in the body is playing a big part in this sickness.

My Doctor treated me with high doses of cortisone, and mouth washes and toothpaste that contain no soap, for months to help me getting relieve from Lichen Planus in and around the outside of my mouth. My mouth was so bad I could not eat at all, I had to liquidise my food and drink it. I could not speak properly, I could not even smile it was too painful. My lips and face was swollen and the corners of my mouth raw and painful like the whole inside of my mouth. My mouth and lips was always dry. I cannot call it a flair up, since it was this bad for a whole year before it got any better. Only better, never really gone. I tried all the Spices, Candida, Diary and sugar diets with no response at all.

I was not appreciated in a senior position at work, overworked and absolutely burned out after twenty five years of service. I was declared disabled after my second biopsy, diagnosed and left my very stressful work a year ago and if anybody ask me that helped my stress levels and made the Lichen Planus slightly better as we speak today. My mouth, gums and tong is still raw and bleeding when I brush my teeth, however I can speak better now, and the swelling is gone, although we do not know for how long. I can still only eat, soft food. I still suffer fatigue and other symptoms. I am no longer taking cortisone, it caused a lot of side effects, the doctors only give it for relieve, it cannot cure. But I am still rinsing with the special mouth wash and stick to the special toothpaste. The Company I worked for now know what they lost, visit me and told me, but too little too late. I have been referred to a trauma therapist and informed by all the doctors that I visited, that this is a chronic disease it is a lifelong sickness and there is no cure.

 

0 likes, 16 replies

16 Replies

  • lee34449
    lee34449 kokkie

    Posted

    You have had a really bad time with it, kokkie. I was diagnosed 3yrs ago at age 62 & had a biopsy, which was ok. I was given the mouthwash which deadens the mouth for a while, but eating & drinking was a real problem. I was told it is an immune system weakness & can be brought on by stress. Mine has now subsided & I can eat & drink pretty much what I like. I believe & hope that your getting out of your stressfull employment will gradually cause it to ease off. There is lots of info online. I wish you all the best, I thought it would never end too, but it did.
    • kokkie
      kokkie lee34449

      Posted

      Hi Lee, Glad you shared your exsperience with me. Keep well.

       

  • terrinoleen
    terrinoleen kokkie

    Posted

    So sorry to hear of your situation Kokkie. You've really had a bad time.  I was diagnosed about 9 months ago but have not had such a hard time. I'm currently on the cortisone ointment and its helped a little, however it seems as though the are affected is spreading so Im a little concerned. I really wonder if the gluten, dairy free diets actually do work?
    • kokkie
      kokkie terrinoleen

      Posted

      Dear Terri,

      Sorry to hear about your situation, nine months is a long time. The Cortisone worked for me, but along with it, I had to rinse four times a day with Betanoid mouth rinse diluted 5ml. Betanoid 5ml. water and every rinse should be at least four minutes. I replaced my toothpaste with GUM toothpaste especially for mouth Ulcers. I am also taking Calcium and Vitamin D tablets. I love lemon in my water. I also stay away from food that sting in my mouth, I am sure everybody is not the same, please go with whatever you can feel make an difference for you and thank you for sharing your experience, if we all do this, we might get some answers for this disease. Good luck. Kokkie.

       

  • Sasr24
    Sasr24 kokkie

    Posted

    I am sorry you have had such a rough time with OLP.  I understand your frustration and pain.  I do think stress has a lot to do with it.  I was also in a job where my value wasn't respected, and I was the only one working as my husband had bipolar disorder and had to stop working.  I supported us both.  Since then, I have retired and moved to another state, and my husband has been diagnosed with dementia.  I always tell myself it could be worse. 

    My OLP started in my mouth.  I just woke up with my entire mouth and gums flame red at the age of 62, but i also had a few purple spots; however, four years earlier, I had ulcers so bad in my mouth and vaginal area that I was in constant pain.  I couldn't talk or eat.  I believe that might have been the beginning of the OLP but that's just a guess. Over the next two years, I had repeated episodes of ulcers.  Many doctor visits after waking up with my mouth red, I finally went to a dermatologist who did a biopsy and diagnosed OLP. 

    I am taking an immune suppressant drug, which has kept it in check (not totally gone, but under control) for the past year and a half.  I do not want to stay on this drug forever.  It's very expensive, too.  If this doesn't go into remission before the end of the year, I am going to try gluten free.  I already exercise 3 days a week and eat very healthy. 

    I know someone else who has had this (not as bad as mine).  Hers went into remission after two years.  So there is hope for us all!  I know you are frustrated.  Try to keep a positive attitude.  Take care of yourself first.  Then worry about everything and everyone else.

    • kokkie
      kokkie Sasr24

      Posted

      Hi Sars24, Thank you for your lovely letter of encouragement. Sure the immune suppressant drug will make a difference, doctors prescribed it for me as well in the beginning stages. The LP is really giving you a hard time as well. Hope things is going better soon. Regards, Kokkie..

       

    • karen41728
      karen41728 Sasr24

      Posted

      Have you ever had abnormal smear test only I have and this is one of the causes, the hpv virus hope your keeping well Sasr xx
  • Guppy007
    Guppy007 kokkie

    Posted

    It sounds like you have the worst of it, can I ask, did you ever try going Gluten free?
    • kokkie
      kokkie Guppy007

      Posted

      Hi Guppy007,  In the stage when I could not eat any solid food and was forced to liquidize my food, I survived with fresh fruit and soft boiled vegetables, liquidized mainly. This diet cut out Gluten and diary. But I believe the LP differ from person to person since the cause is unknown and there is not much guidance, best is stick to what you can feel work for you. We all need to also keep this forum up to date and going with our information, this might help future researches. Kind Regards Kokkie.

       

  • Annie-Marie
    Annie-Marie kokkie

    Posted

    Hello Kokkie

    It’s horrible and depressing isn’t it?  Don’t despair, you just have to keep searching and asking for info and find what works for you.  As mentioned by Lee there does seem to be a link to autoimmune system and stress also can play a big part in this horrible scourge!

    My Dentist has been very informative and helpful.  Saw him yesterday for follow up and he advised to start steroid mouthwash again as soon as I feel burning or tingling in my mouth.  If it happens again will have to have another biopsy to check it is still the same problem!  I have had to eliminate some foods from my diet for Diverticulitis and now also keep to soft unspicy foods but thankfully not tasteless food for the OLP.  I mentioned in my original post what I found helpful to eat and change of toothpaste also helped. Maybe some of the suggestions might be useful for you.  I found most of them on here and other sites.

    I have also found that Aloe Vera Juice and Gel should help with regard to my Diverticulitis and Erosive OLP, as they both inflammatory conditions.  See my consultant in a couple of weeks re Diverticulitis so have lots of questions for him regarding possible connection.

    Take care, and I hope you find lots of support and helpful suggestions. 

    Regards

    Annie-Marie

     

    • kokkie
      kokkie Annie-Marie

      Posted

      Hi Anne Marie, Thank you your input, it is very valuable for all the LP patients and valuable for future research. Hope you get well soon. Regards Kokkie.

       

  • MISS-DAISY
    MISS-DAISY kokkie

    Posted

    Dear Kokkie,

    Well you certainly have a lot to recever from, LP and cortisone RX. Have you tried to see what situations trigger SX by keeping a journal? I discovered everything I was drinking (except water and black coffe exacerbated symptoms)I tried accupuncture as well and it help with my initial outbreak which caused my leg to swell.I agree with the stress I think it was part of my onset as well.

    • kokkie
      kokkie MISS-DAISY

      Posted

      Hi Miss Daisy, I have allways been very allergic to toxic purfumes, strong cleaning products chemicals, sigaret smoke and paint and thinners ect. This use to give me sinus that changed into airtube infection and sometimes ended in my lungs. This went on for years. Then the headaces, red infected eyes, red face flashes and swolen neck started. After this the dry mouth, red bleeding gums and finally the LP was in full swing in my whole mouth. This is how my LP slowley progressed. At the moment it is in remission, although not fully back to normal. The problem with LP is it attack again. Will keep tabs of timetable. Hope you get well soon. Regards Kokkie.
  • Gym_Bag
    Gym_Bag kokkie

    Posted

    Hi kokkie,

    Sorry to know what you're going through.

    The same happened to me except mine started after resigning and returning to work in a lesser position. Corticosteroids eventually knocked my natural cortisol levels out of whack. Now, without the meds, OLP is becoming unbearable again. My unsympathetic doctor may not see the need for disability status, though acting human is becoming more difficult. More blood tests on the way... Gluten and dairy free seems to help a bit.

    Most corporations are only loyal to their investors, CEO / employee pay ratio is at an all-time high, and burnout is commonplace. It's nothing new... Greed, money, power, corruption...

  • cookie27809
    cookie27809 kokkie

    Posted

    Sounds just like me! The 2 things that helped me are a steriod gel placed in dental trays then on my teeth periodically and Periostat pills. The periostat stopped the bleeding gums so that i can brush my teeth now.  I've had this condition for about 10+years. Stress  really does make it act up as do some foods....

    • Gym_Bag
      Gym_Bag cookie27809

      Posted

      Thanks for mentioning Periostat. I'll ask my doc. The dental tray is a good idea too. Sorry you've been dealing with this for so long.

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