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OLP

Posted , 10 users are following.

GailD
GailD

HI, I was diagnosed with OLP about a year ago. Despite giving up all spicey foods, all fruit except bananas, spirits (didnt drink much anyway) reduced wine consumption (couple of glasses a month max); teeth cleaning several times a day with Colgate Pro relief sometimes (dentisit prefers me to) Colgate Herbal which is great and sometime Aloe Vera toothpaste (variable discomfort), Difflam mouthwash as and when and prednisilone tablets used as a moth wash, im still in a lot of discomfort.  I've tried oil pulling with coconut oil, drank aloe vera juice which provides instant relief whilst in my mouth but not after, salt rinses which make my teeth and gums ache...no change.  I had a biopsy taken from my tongue and upper gum which confirmed the diagnosis. Im now getting more marks and spots on my tongue and white marks on my cheeks. My tongue burns and my gums are throbbing and aching.  I havent given up tea...your thoughts?  I dont drink coffee. Any suggestions/comments welcome, thanks.

1 like, 48 replies

48 Replies

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  • annc68
    annc68 GailD

    Posted

    Hi GailD

    I was diagnosed almost 8 years ago but thinking back over the years I think I had many mild outbreaks whenever I had a cold or sore throat. It would always herald a sore mouth. I would love to be able to recommend something really reliable and effective but it's difficult. In my own case I think sugar but especially stress are the main triggers. I use a steroid mouthwash, methabetasone and also coconut oil to swish around my mouth. They both help up to a point. On my latest visit to my Specialist he recommended Gengigel mouthrinse, not cheap but worth a try as it does give relief.  As a percentage of the population us suffers are in small minority and my Specialist said funding is unlikely to be made available as the returns on an effective treatment would not yield a big enough return for the pharmaceutical companies. So it looks like we're stuck with it! I do find that during each separate out break different things seem to work differently, which is almost illogical! Trial and error are the best advice I can give from personal experience. The main thing is to try and stay positive ( easy to say when you feel in pain and down ) as it will pass. It may take a while but one poster on here did say they had been free for 28 years, so hold that thought! Hope you find something that works for you. Good luck.

     

    • karen41728
      karen41728 annc68

      Posted

      Hi ann how old are you I'm 56 and have had this awful thing for 12 years, as I said to Gail I had treatment for abnormal cells after a smear test and I noticed I got this then have you any other problems xxx
    • GailD
      GailD annc68

      Posted

      Hello Ann, thank you for your reply and positive thoughts. I will see if I can get hold of that mouth rinse and fingers crossed for all of us that we get free years before too long! X
  • karen41728
    karen41728 GailD

    Posted

    Hi Gail Iv had lichen planus 12 years mine seemed to come when I had treatment for abnormal cells in cervix after a smear through hpv but I try to watch what I eat and also I'm now having a problem with my skin if I have wine or to much sugar it itches line mad. How old are you Gail and have you had any other problems ? Xx
    • GailD
      GailD karen41728

      Posted

      Hi Karen, thank you for replying. I'm 58 years old. In the past I've had trygeminal neuralgia in my face and when I was at work, I'd get flashes of pain in my face with that but the OLP isn't restricted to the same areas. I havent had any other issues. I finished full time work 5 years ago and now  do a totally different form of work and not much of that! Thanks. Xx
  • GailD
    GailD

    Posted

    Hi, and so it goes on!  Today I have raised red bumps on both sides of my tongue and the semi circle of flat bumps (?) at the back of my tongue are raised.  Ive had a couple of chocolates today...are they to blame?  Does anyone else have this and do I need to go back to my GP or dentist?

    Thanks.

    • gillme1955_UK
      gillme1955_UK GailD

      Posted

      Hi Gail! I'm 59 years old and have had OLP for about 15 years. First spotted by my dentist by the White patches on the inside of my cheeks and confirmed by biopsy. My main problem these days is my tongue. Like you I sufer from burning 'fizzing' feelings and patches of red and white. I have 6 monthly appointments with my dentist who doesn't really do anything about it!  I find most fruit a problem particularly pineapple and strawberries. Chocolate is a major problem for me! I eat it, I suffer! But I do have some at times.  I have Corlan little tablets that are prescribed which dissolve in my mouth and I use prescribed Prednosilone )?) which infuse as a mouthwash. 

      I find it's pretty much with my all the time with times when it flares up worse than others. 

      I am seeing a new dentist next week so I'll see if he has anything new to say.

      i hope your mouth improves soon.

      Kind regards,

      Gill

    • karen41728
      karen41728 gillme1955_UK

      Posted

      Hi gill me I'm pretty much same has you had this lichen planus 12 years getting worse now didn't even know I had it when first diagnosed by my dentist he checks me every 6 month like you I also have itching on my arms think it's connected, I got this lp when I had an abnormal smear test have you ever had a problem with smears xx
    • GailD
      GailD gillme1955_UK

      Posted

      Hi Gill, thank you for replying. It will be interesting to see what a new person seeing you says ...please post any outcome of your visit. Fingers crossed he has some new thoughts. You take care too. Best regards, Gail
    • gillme1955_UK
      gillme1955_UK karen41728

      Posted

      No problem with smears Karen but I seem to be having issues that my GP thinks is menopause related. I have an appointment to see her next Friday and will try to remember to mention my OLP to her but to be honest the doctors are even less interested than the dentist! 

      When end my mouth is bad sometimes just drinking water will set it off and it gets so that I won't talk as it hurts too much. 

      Hope your itchy arms are not connected to the OLP and better soon,

      kind regards,

      Gill 

  • pauline07984
    pauline07984 GailD

    Posted

    Hi Gail, I have only just been diagnosed with OLP (had biopsy result this week) at the moment it is quite mild, I first noticed white patches on my cheeks and was referred to the hospital for biopsy. I find hot drinks, along with anything sharp, like toast or crisps make it a bit sore, but as yet i haven't needed any medication for it.  There are a number of people on here who have had OLP for many years and have posted remedies of things to try.  I think stress has brought mine on, so im trying not to get too uptight about it, but i'm in fear that it will become more severe in the future. I still drink tea and coffee, I just let it cool down more before drinking it now. Hopefully there will be a breakthrough in finding a cure for this disease, although I suppose its low priority compared to other diseases.  I hope you find something that helps you mouth.  Pauline
    • karen41728
      karen41728 pauline07984

      Posted

      Hi Pauline. Iv had this 12 years but recently it's become quite sore depending what I eat, I also have itchiness on my arms think it's lichen planus, how old are you Pauline I'm 56 noticed it more after menopause I also have hpv had an abnormal smear years ago to how about you xx
    • GailD
      GailD pauline07984

      Posted

      Hi Pauline, sorry to hear you have OLP but pleased you have had it correctly diagnosed. I'm a year further on than you and I agree that stress seems tom WB the main cause but I don't admit to being stressed as I think I can cope! So it's a big learning curve for me to admit or even think to myself that I'm under any stress! Also you're right about the foods and having drinks much cooler than I used to.  In the past week, I have also found that sugar in any form (I don't take it in drinks) also affects it and I get a burning mouth...tongue and palette, quite often too. So, onward and upward!  Thank you for your comments. I do find this site really helpful and supportive and a great way of findings it little bits about OLP that I either didn't know or hadn't noticed, and ideas for relief in some form too. I hope you don't get too severe a form. Keep smiling. Gailx
    • karen41728
      karen41728 GailD

      Posted

      Hi Gail how old are you I noticed mine more severe after menopause have you any other problems and have you ever had an abnormal smear test xx
    • GailD
      GailD karen41728

      Posted

      Hi Karen, I'm 58 but 57 when diagnosed but think it had been coming on for a year or so before but with no obvious symptoms. I had an abnormal smear test 27 years ago, but all fine since then. I havent got any obvious link.....Gailx 

       

    • karen41728
      karen41728 GailD

      Posted

      Hi Gail. Did you have treatment for your smear I had laser or something but been fine since, do you have any other problems with lichen planus I have itchy skin and if I drink wine it affects me but my mouth burns with spicy foods drives me mad, it's good to talk with you Gail xx
    • GailD
      GailD karen41728

      Posted

      Hi Karen, good to chat with you too. I had a cone biopsy but no other treatment since. I've had excema since childhood, but characteristic of that type of rash rather than anything else. I can drink wine without any problems, but spicey food, sugar in most forms and fruit set mine off. I have a patch on my tongue all of the time  and I've developed what they are now calling geographic tongue too, lines and spots on it which I have never had before, but the burning feeling and the burning of the roof of my mouth can get me down when it lasts for several days. I usually end up putting a mild hydrocortisone cream on my tongue and taking ibuprofen when I go to bed and hope for the best.  Do you think there is an link between our abnormal smears and the OLP?  Take care gx
    • karen41728
      karen41728 GailD

      Posted

      Yes I do Gail, hpv causes cell changes and it's a skin disease just like lichen planus so it looks like the lichen planus is caused through hpv I'm constantly reading up about it. Be great to keep in touch Gail about this I'm going through a divorce at the minuite and am on anti depressants so it's great to talk with you, minding my grandchildren tonight just put them to bed might chance a glass if wine, I went through the menopause early to how about you? Xx
    • GailD
      GailD karen41728

      Posted

      Interesting. I'll ee what I can find out too. Sorry to hear about your other troubles. Ive been there but 27 years ago. Now happily married for past 22 years, very fortunate. I've been on hrt as couldn't have held my big job without it. Finished coorate work a few years ago and coming off hrt in 2 weeks and know it will be very difficult as I have horrific night sweats and wake every hour, hence going back on hrt whilst at full time work. So I'm instigating a siesta from 2 weeks time, compulsory! So whilst I've has menopause symptoms on and off for the past 15 years, I'll be going through some of it again I fear. You take good care and email me whenever you like. Yes, I agree let's keep in touch and give mutual support. This site is so useful and helpful for this. Gx
    • karen41728
      karen41728 GailD

      Posted

      Hi gail just wondered how your getting on with this bloody lichen planus, my arms are so itchy I'm using e45 what the doctor give me but it's a waste of time I'm sure this rash us lichen planus all little spots and dry patches but the doctor won't say that xx
    • GailD
      GailD karen41728

      Posted

      Hi Karen, my step father has bad skin rashes and his doc prescribes Cetraben emollient. You put it on before showering and it leaves your skin smooth and soft and not itchy....worth asking if you can try this? My mouth isn't too bad at the moment as I've had a week with a couple of free days and I think that really helps. A lesson to learn I think! Hope you are doing ok. Gx
    • karen41728
      karen41728 pauline07984

      Posted

      Hi Pauline. Just wondered how your getting on with the lichens have you ever had treatment for an abnormal smear test only this is when mine started xx
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