Posted , 78 users are following.
Hi I have just been diagnosed with oral lichen planus.
I have had a sore mouth for about six weeks now and have just seen my dentist and g.p.
I thought I would find out how mwny out there have this condition as I have never heard of it before.
3 likes, 214 replies
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designergirl12 elizabeth_lee
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Lynkidd132 designergirl12
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renee77108 elizabeth_lee
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christine04906 elizabeth_lee
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christine
Lynkidd132 elizabeth_lee
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omahagal elizabeth_lee
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I was diagnosed with OLP six months ago, at the time of getting my dental braces. My dentist didn't recognize it. My family doctor ran a bunch of expensive tests and still had no idea what it was and referred me to a dermatologist. He right away diagnosed iy as OLP. Gave me a steriod shot and said I was good to go. He did NOT mention it can turn into oral cancer and when I asked if this would be reoccuring, he said oh no, you'll getover it and be fine. WRONG!!! i've since googled and read articles indicating I'm probably stuck with this curse for many years if not the rest of my life. I've been so miserable, I had my braces taken off early. My tongue feels and looks like it's been run thru a meat grinder. At times it seems to settle down but as soon as I get my hopes up, it flares up big time. When it's flared up, there are raw spots on my tongue and big cracks. sometimes bleeds. I can only eat soft foods and even that is a challenge. I have tried the "magic mouthwash" that has lidacaine, nystatin and prednisone in it and thought it was going t o help as it numbs your mouth real good for an hour or tow.... but after using just a few times, I realized it was actually irritating my OLP. I have also been prescribed a topical steriod gel you put in your mouth - called Clobetasol Propionate .05%.... Tastes nasty. Have used a few times and no big improvement. Iam currently almost at my worst with OLP and plan to make an appointment with another dermatologist this week for another opinion. I haven't been able to figute out what triggers it. Pretty sure spicey foods and of course anything rough or coarse. And I have to eat most my food luke warm or cold. That's my story - not much help to anyone but I apprecaite hearing from others how you're managing this awful condition.
trudy98661 omahagal
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It is not scientifically linked to oral cancer however your chances are increased since your immune system is compromised. OLP is an autoimmune condition.
I feel your frustration; try to find ways to reduce stress. Stress will cause cancer!
I read this in an article "Interestingly, autoimmune disorders occur almost exclusively in developed countries. People in poor nations without modern amenities like running water, flush toilets, washing machines, and sterile backyards don’t get these diseases."
Take care
catherine97989 omahagal
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Hi Omahagal I'm so sorry to hear your story - it's a weird & miserable condition to cope with! I've had it for 3 months now & it worries me all the time - I don't know how bad it will get or if it will ever go.😟 It's disheartening to hear of the many treatments you've had that haven't worked. I hope something makes it better for you - I've got some homeopathic remedies to start tomorrow - I'll let you know if they work. Fingers crossed. Very best wishes - Catherine
Noni9 catherine97989
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Please keep us posted.
Does it involve black walnut hulls?
I read online that might help.
catherine97989 Noni9
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Hi Noni I'm not sure what my Homeopathic remedies consist of - it's the first time I've seen a Homeopath - she had lists of 'ailments' each of which had a number - she put tiny white tablets into a type of machine - set it at the appropriate number for the condition then pressed a button which was supposedly giving the tablet a 'potency'. It all seemed a bit of 'hocus pocus' to me but I'm willing to try anything. I will let you know what happens. Best wishes Catherine.
Noni9 catherine97989
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Dear Catherine, I'm with you. The condition and the total lack of appropriate response from the medical community causes us to try anything.
So much of healing is spiritual and how/what you think.
It's possible you could get some relief.
I hope so.
Please keep us informed.
Best regards
catherine97989 Noni9
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Thank you Noni I'll let you know how I get on.
christine04906 elizabeth_lee
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i have had Oral LP for 35 years and has in my view ruined my life,I have been to top specialists and nothing helps ,so I think it is something we have to learn to live with.good luck
Lynkidd132 elizabeth_lee
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I am not convinced mine is lichen planus as I only have one spot on side of tongue and I would think I would have more. My ENT did do a brush biopsy that he said was lichen My tongue has been compromised as I had one small while lace spot on side which they removed..couldn't eat for a week, months later returned so now lasered it, then brush biopsy and silver nitrate. Good for a few months when sore spot popped up. ENT claims I have scar tissue and because of bump it is rubbing on back tooth. I am so disgusted and worry about it turning to cancer. Sick of sore tongue. Going to see a new oral surgeon.
catherine97989 elizabeth_lee
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Hi Elizabeth I've only just seen your post from over a year ago. I'm suffering the same thing & feel alone with it as I don't know anyone else with the condition. It's comforting to have found this forum along with fellow sufferers.
It's a miserable thing thss LP it's also affected my scalp causing me to loose hair round the front of my hairline! That happened 18 months ago & ive just about got used to that but now my mouth is so sore my tongue dry & hot I don't know which is worse! It's an auto immune thing which makes it so hard to treat - I've not been given any treatment yet for my mouth as having biopsy in 2 weeks. I hope you have found some helpful treatment during the last year - is it any better now? Best wishes Catherine
Lynkidd132 catherine97989
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Hi Catherine. I too have the sore tongue and while an ENT said it was lichen planus I am not convinced it is because I only have one sore spot. However it started with a white cloud like spot that dentist and oral surgeon said was nothing but decided to do biopsy and removed the entire patch. Came back keratosis not LP. Returned months later and had lasered off ..white spot returned again went to ent who did brush biopsy. Said it showed lichen planus. Removed with silver nitrate. In August started with a small sore spot on tongue and went to three doctors not one gave me any real diagnosis or relief other than to say it wasn't cancer. It has not grown any bigger but it rubs on back tooth so always sore. I am going to be seeing a new oral surgeon. I believe that because of the large first biopsy with stitches it caused scar tissue to form and rub on back tooth. If you can, see if they will do a brush biopsy as it is much less invasive and painful. I wish you good luck.
catherine97989 Lynkidd132
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Thanks Lyn - it's such a wierd thing this LP It's taken me a while to get used to my hair loss & now I think I'll have to get used to this sore mouth thing (I don't imagine it's going to just go away) I'm wondering whether homeopathy treatment could help. Thanks for info I will ask my consultant about 'brush biopsy' I hope your new surgeon can make things better for you. Let me know how you get on. Best wishes Catherine.