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Oral lichen planus - not getting any relief after 2 years

Posted , 22 users are following.

Esuma
Esuma

I am getting so down and frustrated with this condition. I finally went to the doctors about 2 and a half years ago after having noticed sore mouth ulcers never healing for over 6 months. I had a biopsy and they confirmed oral lichen planus. Since then I go to the hospital every couple of months and my condition has gotten no better at all. They suggest so many different things, from steroid mouthwashes to immunosuppressant creams I’ve tried to all, it seems they have no idea what to do. My tongue is covered on one side of with ulcers and I’ve had to try and cut out anything remotely spicy from my diet after it became absolute agony to the point that I cried after eating a supposedly mild curry. It burns with any spice, acid, even eating bananas hurts?! The doctor just keeps trying different things or cycling treatments (I’m back on steroid mouthwash again now). It’s so frustrating, has anyone found anything to help at all? I’ve tried aloe Vera gels, tumeric plus all the medications, even an actual tablet dose of steroids, I wear a mouth guard at night to try and stop my teeth irritating my tongue.. no relief still 

2 likes, 31 replies

31 Replies

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  • christy75579
    christy75579 Esuma

    Posted

    I wonder if a different one, like Tagamet might do something different? I don't think that has the same ingredients? I could be wrong....just a thought....I also read a few things on metal fillings causing the OLP....I wonder if my mom slowly had hers switched out, if that would help?

    • mary_pooh
      mary_pooh christy75579

      Posted

      Well I saw dental specialist in London hospital yesterday and I asked same thing about mercury fillings she said there's no connection but I'm not so sure I've had loads out and implants in I'm sure that's part of the problem !! Xx

    • julia52834
      julia52834 mary_pooh

      Posted

      Hi I had my last 2 mercury fillings removed and it has made a slight improvement in my Olp. However my severe all night sweats are gone!!! Completely!!! No more night time sheet changes👏🏼 Also functional med. doctors say the stomach, mouth and brain health are all related. If you have bad oral health it will affect your gut and brain. Next up for me is having 5 root canals taken out ugh costly😬

    • julia52834
      julia52834 christy75579

      Posted

      Hi,  I had mine taken out and my Olp is a little better. But my severe night sweats are gone completely! Word of caution make sure you use skilled holistic dentist because if removed wrong the mercury will saturate the body and you will feel worse! My dentist and assistant both wore suits and face masks and I was totally protected also and had a mouth dam and constant suction.  Mercury is hazardous waste I’m not sure who or why they thought it would be good in someone’s mouth!!!
    • mary_pooh
      mary_pooh julia52834

      Posted

      That's my problem I had root canals and old mercury fillings removed years ago and I wasn't protected so I think the mercury got into my body and is the reason I am ill now but no doctor will agree with me only my homeopath agrees !! I also have Epstein Barr virus positive blood test and mercury feeds that !! Xx

    • julia52834
      julia52834 mary_pooh

      Posted

      So sorry to hear that! I wish these functional med. docs would hurry up and figure it out cause we are all tired of being sick!!! 
  • Esuma
    Esuma

    Posted

    I’m so miserable with my OLP at the minute. It seems worse than ever just hurts having my tongue even in my mouth?! I am so fed up of it. I have been given yet another try of using Tracolimus for 8 weeks, I’ve only been using it a few days but it’s really hurting so far? I don’t recall having side effects before but this time my mouth keeps watering constantly and my tongue is even more sore. I’m going to keep trying for the 8 weeks but I don’t see this as helping. I have started trying oil pulling with coconut oil, taking tumeric tablets.. I’m so desperate for anything to help! The doctor just seems to keep giving me the same things like somehow this time it will work. Gr! Anyone found anything to help?? 

    • julia52834
      julia52834 Esuma

      Posted

      Hi Edina,  I don’t know if you tried this yet or have access to it but I have been using CBD oil for 2 months and it seems to be calming my olp down some. Doctor advised me that it can take 3 mo this of use before it starts working. On a side note just recently had a stressful week and wouldn’t you know it, Lichen planus bumps and itching all over my face and upper arms ugh! For me stress is a definite trigger🙁 Wishing you good luck on your journey please post how oil pulling does for you!

    • Esuma
      Esuma julia52834

      Posted

      I am a little confused by CBD oil - I thought it was still illegal here (UK) but then I’ve seen Holland and Barrats selling it?! I work in healthcare so don’t want to do anything wrong that could cost my job but also if it will help then I want to try it as I’m so desperate for any relief! I haven’t been doing the oil pulling for a week as I went away but I’ll start again and let you know how it helps. The treatment I am on seems to be making my mouth more sensitive especially to hot and cold but perhaps it will start to heal up soon I hope 

  • DDdouble
    DDdouble Esuma

    Posted

    Hey I have delt with LP for years. My dentist recommended I see a dermatologist who used to be a dentist and is a leader in treating LP. He gave me a prescription for a gel that I put on my gums as well as any other area that is affected. This has always worked to calm the outbreak and stop the bleeding. It is called Clobetasol Propionate Gel, 0.05% I hope this can help. Good luck 
    • RoseO
      RoseO DDdouble

      Posted

      i was prescribed CLOBETASOL OINTMENT two years ago by doctors at the UNIVERSITY OF Maryland school of DENTISTRY. i also use mouthguards which i line with the ointment each night and hold for 15 min. this has helped a lot. quit steriods a long time ago. hate the side effects. I ALso take Pantoprazole for my esophgas issues.

  • Suhash
    Suhash Esuma

    Posted

    hi. Esuma

    I'm struggling so much with OLP.

    Have tried everything in vain.

    now trying once again to go on dairy free diet ....recommended by a homeopath. still no help.

    so now I'm trying a gluten free diet too.

    also have heartburn.

    feel so famished ....cant eat most things. no sweet chocs biscuits.

    really wish there could be a cure for this condition.

    any advice will help. desperate.

  • Cancan
    Cancan Esuma

    Posted

    Hi Emma

    I have been diagnosed with Lichen Planus over my neck and dace and its getting worse with very little help from Dermatologists. other than A topical application cream called Protopic and emolients . My motuth was in a bad shape inside with blisters all over so i did a home remedy of a teaspoon of Honey and half a teaspoon of turmeric and applied it on my inner lip area thrice a day a few days back and within 24 hours the blisters were down by 50 percent. i am now drinking the same honey and turmeric mixture with half a cup of warm water daily and swirl it in mu mouth before i drink it. i am confident its helping me on the inside but the lesions are worsening and spreading all over my neck and now up my face. I am advised to get a buopsy done so please suggest whether that is the right course of action anyone?

  • Esuma
    Esuma

    Posted

    Hi everyone.

    just thought Id give an update and also ask for advice.

    My OLP was still unresponsive, and had changed in appearance so I had my (third) biopsy. Unfortunately they have found cancer and pre-cancer at both sites. Has anyone had experience of cancer from OLP? I have no idea what to expect. Further tests and knowledge next week.

    I'm also happy to share my journey here

  • joan23436
    joan23436 Esuma

    Posted

    coconut oil held and swished around in my mouth for 10-15 minutes seems to calm things down . i had a biopsy to confirm my diagnosis. i am scheduled for an appointment with a doctor of osteopathic medicine who also is a naturopath. the approach is to balance the whole system to help the body resolve the underlying issue. i'll keep you all posted on how it goes.

    i love food and sweets. i am going to see if cutting out sugar helps. many people say sugar feeds inflammation.

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