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?

@robinkani

I have been diagnosed with lichen planus and as a professional flutist, it is ruining my life!! I am now thinking of a nutritionist and doing an elimination diet. Any thoughts? My oral surgeon is suggesting going to University of Pa. to find out more info. Right now, I cannot perform professionally. thick lower lip, dry, scaly and numb. The inside has been getting better as I have been on steroids for almost one month.
Any thoughts would be appreciated.
Thanks!

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@robinkani welcome to Connect. You'll notice that I moved your message to this active discussion about oral lichen planus. I did this so that you can connect with other members like @maryz @cmtg @frane1939 and @bustrbrwn22.

As a professional flutist I can't imagine getting this. I'm a horn player and suffer from canker sores, but they go away. I agree with your doctor about going to a learning medical center. I hope they will have suggestions for you. How have the steroids be affecting you? Are they also helping the lower lip (so crucial for the flute)?

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The lips are the most important. So far the steroids have done nothing to help. Still stiff and inflexible.

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@robinkani

The lips are the most important. So far the steroids have done nothing to help. Still stiff and inflexible.

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@robinkani the dermatologist I see was utterly surprised about my lip complaints. They always feel bloated and wrinkled, like I was under water for hours. They look normal though. Basically she told me to use petroleum jelly or Aquafor. Nothing else to be done
Since this is the least of my issues I’m using petroleum jelly.

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@colleenyoung

@robinkani welcome to Connect. You'll notice that I moved your message to this active discussion about oral lichen planus. I did this so that you can connect with other members like @maryz @cmtg @frane1939 and @bustrbrwn22.

As a professional flutist I can't imagine getting this. I'm a horn player and suffer from canker sores, but they go away. I agree with your doctor about going to a learning medical center. I hope they will have suggestions for you. How have the steroids be affecting you? Are they also helping the lower lip (so crucial for the flute)?

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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

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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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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@lichenplanussufferer

I have had Lichen Planus for over 2 years on my gums with extreme bleeding. A few months ago I developed a sore on the side of my tongue. Hurt to eat talk..ect. My sister who is an RN suggested I take Valtrex. After taking 2 tablets a day for 4 days all Lichen Planus vanished. This leads me to believe it is viral. 2 months later and very little symptoms of LP.

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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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I suffered with this for several years. When my dermatologist put me on Methotrexate (I was taking eight 2.5mg tablets once a week) my lichen planus cleared up after about six months. But before that treatment I discovered that my lichen planus flared up any time I ate mushrooms. I don’t know if it is coincidental because my mouth flares up even now, if I eat mushrooms. It stays irritated for a week or two if I have eaten mushrooms. Needless to say, I don’t eat mushrooms in any form (e.g., gravy, etc.)

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See your primary, then a Neuro. I have MS. It needs to be checked. I have type 2 diabetes hard to test. It started out as innocent, essential tremors. But it turns out to be part of the bigger picture.

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@rashida

I suffered with this for several years. When my dermatologist put me on Methotrexate (I was taking eight 2.5mg tablets once a week) my lichen planus cleared up after about six months. But before that treatment I discovered that my lichen planus flared up any time I ate mushrooms. I don’t know if it is coincidental because my mouth flares up even now, if I eat mushrooms. It stays irritated for a week or two if I have eaten mushrooms. Needless to say, I don’t eat mushrooms in any form (e.g., gravy, etc.)

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@rashida I'm new to this group, and very grateful to have discovered a place where we can have discussions about lichen planus. I was recently diagnosed, after experiencing very painful mouth lesions since mid-December. I've been prescribed Oracort dental paste (Triamcinolone Acetonide) by two doctors, and used salt rinses extensively, all to no avail. My dentist suggested L-Lysine supplement, which didn't work. Finally saw an ENT specialist in late February, who diagnosed oral lichen planus and prescribed Clobetasol Ointment (anti-inflammatory topical steroid), which is helping a bit. I also apply pure CBD Oil to the lesions twice a day, which alleviates the pain for a while. I've researched extensively and am now taking Curcumin Ultra 237 mg once a day, as well as trying sesame oil and coconut oil rinses daily. I only use a baking soda toothpaste (no SLS) and a natural type mouthwash (no SLS, alcohol, fragrance, etc.). If I sound somewhat desperate, it's because I AM! I feel that the CBD Oil and Curcumin capsules are the most helpful so far, but eruptions are so painful and ongoing. I have GCA and wonder if anyone else has that? I found a medical article online outlining a case of both these autoimmune diseases. I can post that later, if you wish. Would love to hear from others with this awful condition.

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@rashida, I do not have your specific medical issue, but for my burning mouth syndrome, I take 2-3, clonazepam, .5 mg. daily. If you think this would be of benefit, you may wish to discuss with your doctor. I cannot imagine all the issues you have. Our mouthes mean so much to us. What terrible pain in such a sensitive area. May you find something that will help you. Best wishes, @joybringer1

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@artist01

@rashida I'm new to this group, and very grateful to have discovered a place where we can have discussions about lichen planus. I was recently diagnosed, after experiencing very painful mouth lesions since mid-December. I've been prescribed Oracort dental paste (Triamcinolone Acetonide) by two doctors, and used salt rinses extensively, all to no avail. My dentist suggested L-Lysine supplement, which didn't work. Finally saw an ENT specialist in late February, who diagnosed oral lichen planus and prescribed Clobetasol Ointment (anti-inflammatory topical steroid), which is helping a bit. I also apply pure CBD Oil to the lesions twice a day, which alleviates the pain for a while. I've researched extensively and am now taking Curcumin Ultra 237 mg once a day, as well as trying sesame oil and coconut oil rinses daily. I only use a baking soda toothpaste (no SLS) and a natural type mouthwash (no SLS, alcohol, fragrance, etc.). If I sound somewhat desperate, it's because I AM! I feel that the CBD Oil and Curcumin capsules are the most helpful so far, but eruptions are so painful and ongoing. I have GCA and wonder if anyone else has that? I found a medical article online outlining a case of both these autoimmune diseases. I can post that later, if you wish. Would love to hear from others with this awful condition.

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@artist01 I hear you! I tried all those prescription meds – I found Oracort the most inconvenient! My gums felt like I had razor cuts all over them and they stung when I ate or drank anything so for me salt water rinse was not an option (by the way, I discovered – in my case at least – that the lichen planus got vicious when I ate mushrooms)! I was referred to an oral surgeon at Sunnybrook Hospital (Toronto) who finally injected all around my gums with something (possibly a steroid) and within a week, not only did my gum inflammation clear up, but also the psoriasis all over my body! Unfortunately, about four or six months later lichen planus and psoriasis returned with a vengeance! Went back to the oral surgeon and asked for the injections again. She said it is not a long term solution and because I mentioned my psoriasis she referred me to the Dermatology Clinic in the same hospital. There I was put in Methotrexate – 8-2.5mg. Pills once a week – and it took about six month, but my lichen planus and psoriasis cleared up.

Unfortunately I have fatty liver disease so after three years they decided to titrate the Methotrexate dosage to four pills a week. Psoriasis returned in my scalp with a vengeance so now I am on two Methotrexate pills a week and Stelara injection 90ml every twelve weeks since last July. So far, no effect on my psoriasis, but I’m happy that the lichen planus is still under control!

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@joybringer1

@rashida, I do not have your specific medical issue, but for my burning mouth syndrome, I take 2-3, clonazepam, .5 mg. daily. If you think this would be of benefit, you may wish to discuss with your doctor. I cannot imagine all the issues you have. Our mouthes mean so much to us. What terrible pain in such a sensitive area. May you find something that will help you. Best wishes, @joybringer1

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@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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