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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trudy98661 elizabeth_lee
Posted
What I meant is perhaps a faulty immune system is why I have OLP ...and HAD HPV & HCV
karen41728 trudy98661
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trudy98661 karen41728
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karen41728 trudy98661
Posted
trudy98661 karen41728
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Yes I agree... I just hit 50
I completely see a little there.
HORMONES!
Ughhhh
trudy98661
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'Link' is what I meant
Noni9 trudy98661
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Noni9 elizabeth_lee
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Dear Elizabeth, it depends on who you ask as to how many are afflicted with OLP. My daughter, a physician said it's very rare, my dentist had never seen a case, and had to look up how to treat. My gp didn't seem to know much about it and is referring my to an ent.
I've done some research, and apparently it's more widespread than what they seem to know. I think it's under-diagnosed, because many doctors don't recognize the symptoms, at least here in the US where I live. I think U.K. Doctors have a greater awareness.
Right now my mouth and cheek are riddled with painful sores. Two weeks ago it was both sides under my tongue. Every once in a while, I'll have a week when it's clear. Yesterday, thanks to Karen, I discovered mine is probably linked to a strain of hpv. If you've ever had an abnormal Pap smear or been told you have hpv, that might be true for you as well. But, maybe not. From research, I've learned it may be linked to herpes viruses too. I think medical researchers are just recently starting to investigate. Really hopeful they find the cause, because then they can find a cure. Sorry you are suffering. Pray you find some relief. My dentist prescribed a mouthwash, but it was out of my price range.
Lynkidd132 Noni9
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I live in the States and it is pretty often prescribed here. I have one sore on my tongue. It never goes away yet all of yours seem to come and go. I am going to see a new oral surgeon as I am not convinced it is lichen planus. I just pray it doesn't turn to cancer.
Noni9 Lynkidd132
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Noni9 Lynkidd132
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Author: Kim Gear, Oral Medicine Trainee, Auckland, New Zealand, 2007.
What is oral lichen planus?
Oral lichen planus is lichen planus inside the mouth.
Lichen planus is a chronic inflammatory skin condition affecting about 1-2% of the adult population. It usually affects adults older than 45 years, although it may affect younger adults and children. It is more common in women than in men (1.4: 1).
Oral lichen planus affects 50% of patients with skin lichen planus but may occur without skin lesions elsewhere. All areas inside the mouth can be affected. There may be no symptoms but it can cause discomfort, lumps and ulcers.
Clinical features of oral lichen planus
Oral lichen planus may present in the following forms, and is often of mixed types.
Reticular lichen planus
Atrophic/erosive lichen planus
Symmetrical white lace-like pattern on buccal mucosa (inner aspects of cheeks)
May affect tongue or gums
May ulcerate
Red lesions often with a whitish border
My cause erosions (superficial ulceration)
Most often affects the gums (gingiva) and lips
Can be very painful
Plaque type
Symmetrical white lace-like pattern on buccal mucosa (inner aspects of cheeks)
May affect tongue or gums
May ulcerate
Usually seen in smokers
Confluent white patches similar to oral keratoses
renee77108 Noni9
Posted
Hi Noni, Try a mouthwash of 1/2 hydrogen peroxide, 1/2 water and1/2 tsp of salt. Be sure to not swallow it. My dentist said this is a great mouthwash and it's helped me immensely. And it's very inexpensive. Good luck.
Noni9 renee77108
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I will definitely try this.
Thank you.
Froggy44 elizabeth_lee
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I've had this for a few years but finally diagnosed about 6 months ago. After different drs couldn't figure it out I was referred to an oral dermatologist at Mayo Clinic in Rochester, Mn. I also
have an autoimmune disease called dermatamyositis. It involves muscle weakness, fatigue, with skin problems. My rheumatologist claims this has no connection to my OLP. Who knows.
The meds I'm taking for OLP is Plaquenil tabs and 2 liquids to swish and spit...nystatin and dexamethasone.
How are you doing and what medications?
julie84708 elizabeth_lee
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Lynkidd132 julie84708
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I have had my sore since last August. Been to two dentists, two ent's, two oral surgeons. I have a back tooth that rubs on it. They have recommended a night guard and while oral surgeon said it doesn't look serious he wants to do another biopsy because I haven't had one in two years. Not going to do it. Have appointment with dentist next week and ent April 4.
catherine97989 julie84708
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Hello Julie sorry to hear you've got this annoying complaint too - I've had it for the last 4 months - I had a mouth wash to start with but it didn't help me. I started some homeopathic treatment 6 weeks ago but I don't think it's helped (though I did have a couple of days when it seemed to be much better & it made me very happy) but then it returned. I've had a biopsy & go back 3rd April for result. I don't think many people have this complaint - I seem to be the only one on this forum from the UK. Hope you find relief soon - best wishes Catherine.
Soocee67 catherine97989
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Hi Catherine. I'm also from the UK I live in Dorset. I've had OLP for nearly 3 years.
catherine97989 Soocee67
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Hello fellow U.K. sufferer it's not pleasant - have you found anything that helps?
Soocee67 catherine97989
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Hi Catherine, I've been prescribed various things. Dorchester hospital gave me Difflam mouthwash which is an anaesthetic and gives temporary relief if I have eaten anything sharp or spicy by accident. I had a very painful biopsy and waited 6 weeks for the result which came back as erosive OLP. I was given a steroid mouthwash which helped.
A few months later my gp referred me to yeovil dh oral surgery as I had a massive ulcer which wouldn't disappear. Again another biopsy which was done by one of the kindest gentlest doctor i have ever met. Results came back within a fortnight. I have been on and off prednisone taken systemically together with Betamethasone soluable rinse fo r nearly a year. Last time I saw him he wasn't happy with my progress and referred me to the BRI Oral medicine department. Again another 2 biopsies as they were not convinced it was OLP. They did punch biopsies on my cheek which were not painful and have given me no trouble. Results came back as OLP. This time I was phoned by the clinic as soon as results came through (just over a week).
they did a lot of blood tests and said they wanted to prescribe immunosuppressants. They put me on stronger solution of Betamethasone mouthwash and some clobestol ointment to mix with orabase and use on ulcers directly. This works really well. I see them every three months. I refused the immunosuppressants because they seemed far too aggressive and have worrying side effects. The only med I take systematically is low dose doxycycline in the winter months.
It isn't a cure. I get very nervous every time my appointments come through but feel well looked after. I can ring them any time if I need to between appointments.
thats my story so far
best wishes Sue
catherine97989 Soocee67
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Hi Sue I feel for you,it is worrying & you can't ever forget about it because your mouth is so much part of everything - eating makes mine feel nice especially custardy mousse things but then when it's gone I'd like more just for the comfort (not a good idea as I've lost 2 stones with weight watchers over the last year)! My mouth feels hot dry sore & I get a strange variety of sensations. I had a punch biopsy which didn't hurt at all & go for result on 3rd April. Over the last 2 years my hair line had receded all around the front & sides - a biopsy showed that too is lichen planus! I wear a wig now. I'm very healthy in every other way & wish this would give up & go. I'll let you know how I get on. Keep in touch. Best wishes Catherine
Lynkidd132 Soocee67
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You've really had a lot of biopsies that I'm trying to avoid. I did not have a sore tongue when hygienist found a small cloud like spit. Dentist said looked like nothing. Sent me to oral surgeon. He said looked like nothing but couldn't tell unless a biopsy was done. Removed the whole thing, stitched it. Couldn't swallow for a week. So much pain. Did not come back olp. Just some atypic cells and callous type fiber. Six months later spot returned. Lasered it off. Six months later sore appeared as rubbing on back tooth. New oral surgeon wants to biopsy again. Don't think I will do it
julie84708 catherine97989
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Thanks! Nothing so far has helped much. I'm really new to this and haven't tried too many things. It really is life changing and so painful ... and discouraging. I'll post if I find anything that works. I just pray it doesn't go to my skin, hair, eyes etc. Horrible!
Soocee67 Lynkidd132
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Hi Lyn I can understand that but sometimes it's not OLP. It's better to be sure. There are other A.I. conditions which look very similar. Treatment isn't always the same. My last was a punch biopsy which was not painful and left no symptoms. I only agreed because consultant thought it looked like something called Mucous Membrane Pamphagoid. Luckily it wasn't. I don't think that they do it lightly. Good luck with whatever you decide.
catherine97989 julie84708
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I know it is awful - think I'm getting used to it now😟 I just hope like you that it doesn't get worse & appear elsewhere. I was so scared at first that it might turn to cancer (as I'd read on-line) but it's comfort to me that the people in this forum though suffering have not mentioned that it has happened. Let's hope we find relief. Keep in touch. Catherine