Oral lichen Planus

Posted by lovebug61 @lovebug61, Apr 4, 2019

Anyone in the group suffer from Oral Lichen Planus. I am at my wits end with all these erosive sores in my mouth. I've had two biopsies , one in the inside cheek and one under the side of my tongue. The spot under the tongue is extremely sore to touch and has been for over a year. It scares me because the soreness never goes away, sometimes it isn't as sore but nothing helps. Any home remedies for this dreadful condition?

@rashida

@joybringer1 I had lichen planus – which felt like razor cuts all around my gums. Is that the same as burning mouth? Initially I was given a (steroid?) injection all around my gums by an oral surgeon I was referred to. This cleared up the lichen planus as well as my psoriasis, but both returned with a vengeance after four or six months and I went back to ask for another injection. She said the injection was not a permanent solution and referred me to a dermatologist who put me on Methotrexate, which kept it and my psoriasis under control. I had to titrate down on my dosage because of history of fatty liver disease and at the lowered dosage psoriasis has returned on my scalp with a vengeance – but my mouth is still clear! I find eating mushrooms causes a recurrence still, but not as severe while in Methotrexate.

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@rashida I have recently diagnosed Lichen Planus, which is why I'm trying Curcumin capsules now. Nothing the doctors or dentists prescribed had helped much. I also apply CBD Oil directly on the mouth lesions, which takes the pain away for a while and, I think, helps to heal the lesions more quickly than other things I've tried.

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@rashida

@joybringer1 I had lichen planus – which felt like razor cuts all around my gums. Is that the same as burning mouth? Initially I was given a (steroid?) injection all around my gums by an oral surgeon I was referred to. This cleared up the lichen planus as well as my psoriasis, but both returned with a vengeance after four or six months and I went back to ask for another injection. She said the injection was not a permanent solution and referred me to a dermatologist who put me on Methotrexate, which kept it and my psoriasis under control. I had to titrate down on my dosage because of history of fatty liver disease and at the lowered dosage psoriasis has returned on my scalp with a vengeance – but my mouth is still clear! I find eating mushrooms causes a recurrence still, but not as severe while in Methotrexate.

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@rashida, my diagnosis was burning mouth syndrome. I wouldn't describe my feelings like razor cuts. My mouth, tongue, and lips felt like they were on fire. In the winter, I used my cold hands to press on my lips and I sucked on ice for inside my mouth. I kept telling the doctors that the inside my mouth felt like a garbage can. Not sure why I chose that comparison. That is under control with the Clonazepam. Razor cuts would describe what is going on in my vulva area. That was diagnosed as lichen sclerosis. I surely have not been cured of that. I do not believe there is a cure. I go from one flare to another very rapidly. I use Halobetasol and a compounded numbing ointment. Prior to that, I used Lidocaine/Prilocaine to numb. My scalp does burn and I use Head and Shoulders shampoo. My dermatologist just said I had flaky scalp. Nothing really helps that, but my PCP recommended 20 mg. of Amitriptyline at night. He was hoping it would help both areas. I suppose it could be worse, but sitting can be very painful. Sometimes I sit on an ice pack. If I were you, I would drop eating any mushrooms. I wonder if there is any connection between lichen planus and lichen sclerosis. I will have to look into that. I am sure you are as tired as I am of looking for help. Onward and upward! @joybringer1

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@joybringer1

@rashida, my diagnosis was burning mouth syndrome. I wouldn't describe my feelings like razor cuts. My mouth, tongue, and lips felt like they were on fire. In the winter, I used my cold hands to press on my lips and I sucked on ice for inside my mouth. I kept telling the doctors that the inside my mouth felt like a garbage can. Not sure why I chose that comparison. That is under control with the Clonazepam. Razor cuts would describe what is going on in my vulva area. That was diagnosed as lichen sclerosis. I surely have not been cured of that. I do not believe there is a cure. I go from one flare to another very rapidly. I use Halobetasol and a compounded numbing ointment. Prior to that, I used Lidocaine/Prilocaine to numb. My scalp does burn and I use Head and Shoulders shampoo. My dermatologist just said I had flaky scalp. Nothing really helps that, but my PCP recommended 20 mg. of Amitriptyline at night. He was hoping it would help both areas. I suppose it could be worse, but sitting can be very painful. Sometimes I sit on an ice pack. If I were you, I would drop eating any mushrooms. I wonder if there is any connection between lichen planus and lichen sclerosis. I will have to look into that. I am sure you are as tired as I am of looking for help. Onward and upward! @joybringer1

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@joybringer1 Oh gosh, life can be cruel! I'm so sorry you have all that pain and trouble.
I've had scalp issues too, likely from my GCA. Selsun Blue was recommended by my doc, which didn't work. I've tried so many different shampoos and conditioners, I gave away a whole box of them that I was allergic to, to a friend. I finally showed up at our local Healthyway Foods and talked to a very knowledgeable staff member. She recommended Curelle products (Canada), and I've been using the shampoo, conditioner, build-up remover treatment (helps to remove sebum, etc.), even styling gel, which I haven't been able to use for years due to allergy. Although other products I tried "said" they were "natural", these products are pure, and they work. No more itchy scalp, pain, etc.! I urge you to check with your local health food store! Good luck! Laurie

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@johnbishop

Hello @orangealert, Welcome to Mayo Clinic Connect. Thank you for sharing what helps keep you free from canker sores. It seems like such a simple solution – buying toothpaste without the foaming agent sodium lauryl sulfate (SLS).

"Mouth injuries (like biting the inside of the lip or even brushing too hard and damaging the delicate lining inside the mouth) also seem to bring on canker sores. Sodium lauryl sulfate (SLS), an ingredient in many toothpastes and mouthwashes, has been linked to canker sores, and sometimes the sores can be a sign of an immune system problem." – Canker Sores: https://www.hopkinsallchildrens.org/patients-families/health-library/healthdocnew/canker-sores-(1)

A few years ago I switched to Arm & Hammer products that used baking soda just because I remember as a kid using just plain baking soda to brush my teeth and was pleased to find it does not contain any SLS.

Do you have any autoimmune conditions or symptoms that you can share any tips on or that you are looking for something to help?

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@johnbishop I use Arm and Hammer toothpaste, too, John. It's the first toothpaste I've ever found that is trouble free for me, and even whitens my teeth. Really helps alleviate canker pain from Lichen Planus too, because there's no SLS or other bad stuff in it.

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@johnbishop Hello again, John. I forgot to mention, I've finally had a mouth guard made by my dentist. This involved having molds (moulds? Lol) made of my teeth but not too big a deal to go through. Very costly ($600 for me with no dental plan) but I am so desperate to help the pain and misery of Lichen Planus. My thought in getting the mouth appliance was that it would help keep my teeth away from my sore tongue and cheeks, lips, etc. The material it's made from is silky soft and softish in my mouth.
And it does work, giving me relief when I need it! I usually wear it at night, but also sometimes during the day during painful periods.

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@joybringer1

@rashida, my diagnosis was burning mouth syndrome. I wouldn't describe my feelings like razor cuts. My mouth, tongue, and lips felt like they were on fire. In the winter, I used my cold hands to press on my lips and I sucked on ice for inside my mouth. I kept telling the doctors that the inside my mouth felt like a garbage can. Not sure why I chose that comparison. That is under control with the Clonazepam. Razor cuts would describe what is going on in my vulva area. That was diagnosed as lichen sclerosis. I surely have not been cured of that. I do not believe there is a cure. I go from one flare to another very rapidly. I use Halobetasol and a compounded numbing ointment. Prior to that, I used Lidocaine/Prilocaine to numb. My scalp does burn and I use Head and Shoulders shampoo. My dermatologist just said I had flaky scalp. Nothing really helps that, but my PCP recommended 20 mg. of Amitriptyline at night. He was hoping it would help both areas. I suppose it could be worse, but sitting can be very painful. Sometimes I sit on an ice pack. If I were you, I would drop eating any mushrooms. I wonder if there is any connection between lichen planus and lichen sclerosis. I will have to look into that. I am sure you are as tired as I am of looking for help. Onward and upward! @joybringer1

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@joybringer oh, what could be worse than what you’re going through! My heart goes out to you because I know the agony of searching for the right treatment! It took me almost ten years before I found a solution so I understand what you’re going through! Are you in Canada, or in the States?

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@artist01

@joybringer1 Oh gosh, life can be cruel! I'm so sorry you have all that pain and trouble.
I've had scalp issues too, likely from my GCA. Selsun Blue was recommended by my doc, which didn't work. I've tried so many different shampoos and conditioners, I gave away a whole box of them that I was allergic to, to a friend. I finally showed up at our local Healthyway Foods and talked to a very knowledgeable staff member. She recommended Curelle products (Canada), and I've been using the shampoo, conditioner, build-up remover treatment (helps to remove sebum, etc.), even styling gel, which I haven't been able to use for years due to allergy. Although other products I tried "said" they were "natural", these products are pure, and they work. No more itchy scalp, pain, etc.! I urge you to check with your local health food store! Good luck! Laurie

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@artist01 Thank you! I’m in Toronto and have the Healthy Planet here so I definitely will go in there check out Curelle! I thought that was just lotion, which I think I have tried (I have tried so many lotions and creams for my itchy body, I forget the names!) but I’d never heard of Curelle shampoo and conditioner!

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@orangealert

Hi. It is my first time here, and I'm looking at everything looking for clues or answers and already have auto-immune problems. I noticed you mentioned canker sores. (I HAVE THE CURE, BUT I TAKE A WHILE TO GET THERE) My entire life? I had THE WORST Canker Sores any Dentist, Doctor or other person ever saw or heard about. I had them about 75% of the time. "They" said I must have oh shoot- the std (but in my mouth). I doubted this as I had a friend who had it in her nose and this looked nothing like it. When I got one? I got more. They spread into huge, red, both bloody and I'm trying to think back (it's been decades) maybe whitish lesions. It looked like someone with a funnel stamped and pored some horrid acid that ate through mucosal layers in my cheeks, on, under on, around my tongue. They would last a solid 10 days (no less). I cried all the time. I was in Pharmaceutical Sales and I would try so hard to hold lets say cheek lesions away from touching my teeth on a sales call by finding weird micro-expressions to support this. Eventually the Dentist gave me the Rx strength (4%) of Lidocaine numbing agent and I always carried it on me. I tried everything. I was based in MN. I regularly called on the Mayo Clinic. I knew high end from snake oil.

One day (circa 1994) I was driving and listening to talk radio a lot (I covered 5 states in the upper Midwest, flew to places, drove more in rental cars, Regional Meetings, National Meetings…I was gone 75% from home. So I was listening to something most of the time. This was right BEFORE mobile phones and home pc's or work laptops. Paul Harvey usually doing a Salespitch for Husqvarna "The Husky" saw or something would then say "Stand By For News…" One day he's talking about the then-new $7.99 toothpaste Rembrandt. But he's pitching it for "Canker Sore Sufferer's" WHAT? He claimed Sodium Lauryl Sulfate (a coconut derived sudsing or "saponificating" agent was an irritant and cause for Canker Sores in the people that got them. He said Rembrandt (just one formula then) had very little of it and it would end my agony. I knew it WOULD not work, but I HAD to try it. I was pre-disappointed as I spent the high sum for toothpaste and no sum to be a miracle.

Conclusion: IT WAS TRUE. It wasn't any food or sharp tortilla chip or brushing too vigorously or biting my cheek with my sharp incisors and my dry mouth, nor any STD in my mouth. Whatever I had cleared up and I NEVER got one again. Oh I had to test other toothpaste new "Sensodyne" type one's or sexy minty ones, or organic strawberry ones. They ALL had SLS in them high in the ingredient list. I ALWAYS GOT THE MONSTER NIGHTMARE CANKER SORES BACK WITHIN 2 DAYS. Then they even released Rembrandt CANKER SORE FORMULA with NO SLS in it. My acid eaten huge lesion canker sores were GONE. Then I panicked and started to HOARD them. Then I read ingredients to see IF ANY OTHER toothpastes were doing this (NO). I told my mother, I told every sufferer, but apparently no one believed me, and I was the only one that bought it even though it was too-good-to-be-true. Because after a few years? They DISCONTINUED the CANKER SORE FORMULA. But I had discovered the shelf of dental ACROSS from the other stuff. The stuff for DRY MOUTH. At the time? The box had full-color pics of nasty-discolored teeth with the WORST GINGIVITIS GUMS. It had no SLS so I thought "screw it" I carried it and grabbed an Enquirer as well and some drug-store booze so my cart had a theme.

That stuffs works too. I can't recall the name. I've been using it for years now. There are a couple of competitors with no SLS on the scene also that work, all still around $7.99. Unfortunately they revamped the nasty box, and the smelly-looking teeth are gone. I think NONE of them even mention THEY WILL SPARE YOU FROM CANKER SORES 100%. I don't test anymore. It's been 20 years since I've had a canker sore. But I can be on my way back to a mouthful if I brush 2x with any of the 99.8% options available. It's like the light bulb got un-invented right before my eyes and the Dark Ages reappeared. I hope I've sufficiently convinced you TO TRY ONE TUBE.

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@orangealert oh wow … I definitely will keep this in mind and suggest it to anyone else who suffers from cankers! Fortunately for me, my lichen planus is finally under control – and I stay away from mushrooms which I discovered exacerbated the problem – before I found treatment!

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@fdixon63

Hi. I'm new to this group. I've had LP "flares" a number of times but it usually calms down after a couple of weeks. Now it has hit a different gear. In early Sept. the dermatologist had treated some precancerous places on my right hand and he said it "traumatized" my LP and created numerous problems. He prescribed Clobatosol cream but it has not helped. Please let me know what dosage of Valtrex and how long did you stay on it. I see my dermatologist again tomorrow and want to discuss it with him. Sounds too good to be true but I'm willing to try. Have a Blessed day.
Faye

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@fdixon63 have you read @orangealert’s post here dated October 20, 2020? Worth giving that Rembrandt toothpaste a shot. My lichen planus is under control now by using Methotrexate (prescribed by my dermatologist – took about four to six weeks before I saw result) but if my mouth ever flares up again, I’m going to get a tube and try it out!

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@rashida

@artist01 Thank you! I’m in Toronto and have the Healthy Planet here so I definitely will go in there check out Curelle! I thought that was just lotion, which I think I have tried (I have tried so many lotions and creams for my itchy body, I forget the names!) but I’d never heard of Curelle shampoo and conditioner!

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@rashida I hope you can check out your Healthy Planet store soon! My store told me to check out the Curelle.ca site first so I could decide which products are best for me. I ordered ALL of them from my store and they're perfect for me! No bad effects whatsoever. The prices were the same online and instore, so no waiting. I ordered the 250 ml sizes at first, so I could test them. Yesterday I bought two of the 500 ml size lotion because it's finally one I can use. Good luck!

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@artist01

@johnbishop Hello again, John. I forgot to mention, I've finally had a mouth guard made by my dentist. This involved having molds (moulds? Lol) made of my teeth but not too big a deal to go through. Very costly ($600 for me with no dental plan) but I am so desperate to help the pain and misery of Lichen Planus. My thought in getting the mouth appliance was that it would help keep my teeth away from my sore tongue and cheeks, lips, etc. The material it's made from is silky soft and softish in my mouth.
And it does work, giving me relief when I need it! I usually wear it at night, but also sometimes during the day during painful periods.

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@artist01, I'm glad to hear the mouth guard gives you some relief…bummer that it costs so much. Thanks for sharing your experience with the mouth guard.

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@rashida

@fdixon63 have you read @orangealert’s post here dated October 20, 2020? Worth giving that Rembrandt toothpaste a shot. My lichen planus is under control now by using Methotrexate (prescribed by my dermatologist – took about four to six weeks before I saw result) but if my mouth ever flares up again, I’m going to get a tube and try it out!

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@rashida I just posted @johnbishop about toothpaste. We both use Arm and Hammer. It's excellent for my use, with Lichen Planus.

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