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Oral Lichen Planus/ Lichen Planus

Posted , 15 users are following.

luchanadonna
luchanadonna

It began for me on February 2, 2015. My mouth hurt, Doctor after doctor told me I had thrush. After thousands of dollars spent....I was seen by a Dr. of internal medicine 3 times...8 vials of blood. An ear nose and throat Dr....an immunologist 3 times...8 vials of blood. A Dr. of infectious disease 3 times....4 vials of blood. NO answers. Meanwhile random rashes were appearing all over my body and my mouth continued to get worse. On June 8, 2015, I deciced ON MY OWN to see a dermatologist. I was diagnosed with Lichen Planus and Oral Lichen Planus. A biopsy confirmed it. I was first given a topical steroid to put on all my random rashes. I also had to put it in my mouth on the back of a spoon. 10 minutes a side and on my tongue and gums. My mouth continued to get worse. Next I was given high doses of Prednisone. 60mg. per day for a week....40mg. per day for a week and so on. My mouth continued to get worse. Yesterday I went back to the doctor....4 more vials of blood. She now wants me to take Plaquenil. 200mg. pills twice a day. I have not taken them yet. I am afraid to. The side effects are so scary! I have to get my eyes checked every 6 months. Can someone please help me? I know I am not dying but this disease is chipping away at me day by day  sad

2 likes, 68 replies

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  • kokkie
    kokkie luchanadonna

    Posted

    Hi,

    Sorry to hear about your struggle with LP. It is so sad that so little is known about LP that Doctors also sometimes feel helpless. To sum up all the advice I have read on the internet for Oral Lichen Planus, it will be.

    1. Look at your diet, reduce sugar, gluten and dairy product and test what work for you.

    2. Use a non-alcoholic mouth rinse 4 times a day, rinse for 4 minutes at a time.

    3. Change to a soft toothbrush and toothpaste that contain no soap, like the GUM products, only brush twice a day.

    4. Vitamin D tablets or a lot of sunshine.

    5. Eat a lot of fruit and veggies to up your potassium, or use tablets like Slow K.

    6. Avoid alcohol.

    7. Try out methods to detox, like a glass of Luke warm water with lemon first thing in the mornings.

    8. Make sure your bowls is regular.

    9. Change your lifestyle to reduce your stress levels. Very important.

    10. Last resort cortisone treatment to help you get over severe attacks.

    Love yourself, pamper yourself, rest a lot and stop looking in the mirror.

    It is a very uncomfortable ordeal that you are going through, I know, I am suffering with it myself. Remember not everybody will understand your discomfort, because people only believe what they can see. Please always bear in mind that people cannot see that you are sick, you need to tell them how you feel.

    Hope my advice can help.

    Regards,

    Kokkie

     

    • kaleani75551
      kaleani75551 kokkie

      Posted

      Hi - i just want to add a few words to your note.  

      i was on a French medical site when i researched oral lichen planus and this doctor suggested to rinse your mouth 2-3 times a day with Sesame oil, for about 20 minutes.  I will try this one myself.

      the French are believers in natural treatments as much as possible, you can benefit so much from essential oils too.  Pure Aloe Vera is excellent for so many things.

    • karen41728
      karen41728 kaleani75551

      Posted

      I havnt heard this I will try it thanks I do use coconut oil sometimes 
  • seagal
    seagal luchanadonna

    Posted

    Just one more thing luchanadonna.  I honestly don't think anyone who does not have or had OLP can understand what you are going through.  The pain, aloneness, suffering, etc.  For example, before doing a biopsy, my ENT said that I was biting the insides of my cheeks and had to stopp doing that.  Also, my husband, who is very health conscious--only veggies, fish, fruit, etc., and does all the cooking because he is very concerned about my OLP, has no idea how painful it is.  Maybe because, although I have told him how painful it is, I usually just live iwth it and don't complain about the pain.  Anyway, just know that there are many of us out here, we know the pain, suffering, and loneliness you are enduring.  Keep trying different things--especially the diet--no sugar, no dairy, gluten-free, and lots of veggies, furit, fish, nuts, water, adn detox.  Once you get rid of these, you will feel better and things will change and, you wo't miss any of the junk food, meat , dairy, etc. I used to eat gallons of ice cream, candy, etc., now, i'm free of all of it and it makes a difference. I'm not completely cured, but on my way.  Be well and stay positive.
    • luchanadonna
      luchanadonna seagal

      Posted

      Thanks so much! I was only diagnosed 8 1/2 weeks ago. It was 5 1/2 months of "specialists" before that. I know it is hard on my husband. I am definitely not myself. Sometimes, I get up at 4 am....just so I can cry quietly by myself.  I try to put on a happy face. I am a hairstylist. It is sooooooooooo hard PRETENDING to be happy everyday, while inside I am suffering so.
  • kelly74656
    kelly74656 luchanadonna

    Posted

    i take nothing for it,,, i have a high pain tolerence and really hate to put all that crap medicine in my body,,,,,, i take magnesium,, and vit d,,,,, i have it on my lips and in my mouth and recently on my forehead,,,i think the main thing is to build your body up with lots of greens,,, garlic and ginger,,, i know it sounds weird but so far i am doing ok and i started walking everyday,,, well 5 days a week and try to eat and stay positive... i know this doesnt help much but this is working for me and from what i can tell i have had it for more than 15 years,,,  i refuse to take prednisone and please make sure that they dont just stop that cause you need to be weaned off of prednisone,, it can wreak havoc on your body,,, the cream is ok cause it is external,,, i really think a big thing in defeating this is a positive attitude,, i say to myself " at least i dont have cancer"  its all about putting good stuff in your body,, stay positive is the only way and just know that you are not alone!!!!  the other day i was diagnosed with severe fungal infection in my big toe ( which is another side affect),,, the pills were going to cost me $150 so i did some research and found soaking your foot in vinegar and water would help... two days later my toe is now  looking normal,, stay positive,,, its the only thing i can do to help you!!!
    • luchanadonna
      luchanadonna kelly74656

      Posted

      I have decided to ween myself off the Prednisone. I am NOT going to take those other pills. I hardly slept last night. My heart was racing. It's going to be a LONG day.....I only slept about 3 hours...ugh
    • kristyk
      kristyk luchanadonna

      Posted

      Hi, When I read your story it took me back 10 years to when I thought I was in living hell. My mouth had bleeding ulcerations that turned my mouth inside out. I looked like a monster. Saw every specialist possible. I had a couple cortisone shots in my gums. That was the absolute worse thing while sitting on the examine table (not on purpose) I kicked the Dr. I lost teeth. I finally saw a dermatologist who gave me 100mg. Of cortisone with numbing agent so it didn't hurt as bad an Keflog not sure if spelled right. It was long time ago

      He gave me the same as a topical to put on mout, gums etc. I went through this ea. 2 weeks. I had LP for over a year by that time and I didn't go out of the house for that long. I looked horrid. People would stare and point and talk about me. People can be so cruel. So that's when I decided to not leave my house. Back to dermatologist. After going to him for a few weeks it started getting better. He stopped treatment was worried about the length of time on cortisone,prednisone. Told me if wasn't better ins month to call and make an appt. I never had to call him back agai

    • rajkiwi
      rajkiwi kristyk

      Posted

      Hi,

      What do you mean it looked horrible. I have myself avoided outdoors for a while, not because of what people will say, though such thoughts did pass through my mind. I avoid outdoors to stop dust and other pollutants from infecting me. My OLP affected my lower lips in its current episode and so I need to constantly moisturise it to talk. 

    • rajkiwi
      rajkiwi luchanadonna

      Posted

      Hi Doses of cortisones give you a rush of energy. I used those times to finish off a lot of my work plus I was angry and had to look out for my temper. I slept only thinking of wanting to get up the next minute. 
    • kristyk
      kristyk rajkiwi

      Posted

      HI, i didn't go.outside because I was in alot of pain. My mouth was ulcerated,my lips were bleeding and cracking terribly. It would hurt to talk. Also the weather would really get hot, windy, or or even cold. These sores were so hard to deal with because of having Sjogrens Disease- Having such mouth dryness and no moisture it was difficult. The fact that a fee people out there are not nice was something I had never experienced before. I actually started wearing a medical mask. My.Dr. Suggested I do that for many reasons. The mask was difficult to wear it would rub on my mouth and cause irritation. Mostly because of no moisture and sever dryness from Sjorgrens disease
    • rajkiwi
      rajkiwi kristyk

      Posted

      Thanks kristyk for sharing your experience of pain and suffering. 

      It helps patients like us to get through our own episodes. Its almost 2 months now and am still patiently waiting for the lip to heal and skin to cover. It is showing promise though :-)

      Wish you and your family a Happy New Year

    • kristyk
      kristyk rajkiwi

      Posted

      Thank you for sharing that with me. I am glad that you are seeing some promise in your struggle. It definitely takes patience. That is so important. I wish you the best and hope you get relief soon!

      Have a Blessed New Year!

      Kristyk

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