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?

@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 I haven’t eaten mushrooms – not deliberately, at least – since I discovered they exacerbated my condition some years ago. Pity because I loved mushrooms!

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@artist01

@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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@artist01 I intend on checking checking out Arm & Hammer too – I have a feeling it might be the more affordable one for me (based on my observation that Arm & Hammer baking sofa itself is quite affordable, lol).

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Help! Anyone with this version of OLP? I had OLP 6 years ago. Never went away, evolved into the following: scalloped design all around the perimeter of my tongue / lip somewhat misshapen on one side / Now it impairs my speech and people are constantly asking "what was that?" AS a teacher, this has begun to interfere with my job. Any experience with this? I;ve been to many doctors in high-level institutions. No luck.

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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 for the tip. I will look into Curelle products. We have a local health food store and perhaps they will have these products. It certainly cannot hurt any ongoing problems. I appreciate your concern. Best wishes, @joybringer1

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@rashida

@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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@rashida, I live in the states. Thank you for your concern. Every day is a challenge, not only for me but many others. All we can do is try to get through the day. Ah, then if we are lucky we will have sleep. Have a good night's rest. @joybringer1

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@rashida

@artist01 I intend on checking checking out Arm & Hammer too – I have a feeling it might be the more affordable one for me (based on my observation that Arm & Hammer baking sofa itself is quite affordable, lol).

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@rashida Yes, Arm and Hammer toothpaste is very affordable. Under $4.00!

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@jshdma

Help! Anyone with this version of OLP? I had OLP 6 years ago. Never went away, evolved into the following: scalloped design all around the perimeter of my tongue / lip somewhat misshapen on one side / Now it impairs my speech and people are constantly asking "what was that?" AS a teacher, this has begun to interfere with my job. Any experience with this? I;ve been to many doctors in high-level institutions. No luck.

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@jshdma I have OLP, but only since mid-December. It scares me to hear others here who have suffered this awful thing for such long periods.
It's so sad that you are a teacher trying to combat the effects of this. When mine first began, I could barely talk, eat, sleep. I saw several doctors and a dentist, with various diagnoses and prescription meds. and finally saw an ENT specialist who diagnosed OLP, and prescribed Clobetasol, which has helped a little. I've researched a lot and also use Curcumin capsules as well as applying CBD Oil directly on the lesions. These last two seem to work best, although still a long way to go. I've also had my dentist make a mouth guard, which is a big help to keep my teeth away from my painful tongue. I wear it mostly in the evenings and at night.

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@artist01

@rashida Yes, Arm and Hammer toothpaste is very affordable. Under $4.00!

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@artist01 Awesome! Just my price range! 😊

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@jshdma

Help! Anyone with this version of OLP? I had OLP 6 years ago. Never went away, evolved into the following: scalloped design all around the perimeter of my tongue / lip somewhat misshapen on one side / Now it impairs my speech and people are constantly asking "what was that?" AS a teacher, this has begun to interfere with my job. Any experience with this? I;ve been to many doctors in high-level institutions. No luck.

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@jshdma please read about @orangealert’s post here dated October 20, 2020, and tip. It may help you. Also @johnbishop and @artist101 have posted that they used Arm&Hammer toothpaste. Thankfully mine is under control with Methotrexate (took four to six months to clear, though) but I sure can relate to your experience! You have my full sympathy!

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@joybringer1

@rashida, I live in the states. Thank you for your concern. Every day is a challenge, not only for me but many others. All we can do is try to get through the day. Ah, then if we are lucky we will have sleep. Have a good night's rest. @joybringer1

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@joybringer1 I am in Canada!

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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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@lichenplanussufferer Lichen Planus is not viral, it's an autoimmune disease.
I guess you got lucky, seeing yours disappear by using Valtrex. I sincerely hope it doesn't come back on you.
Best wishes, Laurie.

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@artist01

@lichenplanussufferer Lichen Planus is not viral, it's an autoimmune disease.
I guess you got lucky, seeing yours disappear by using Valtrex. I sincerely hope it doesn't come back on you.
Best wishes, Laurie.

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I convinced my dermatologist to prescribe Valtrix for me when I flared last fall based on a similar claim. The flare was the worse I had ever experienced. The Valtrix did not improve the LP but no side effects from the medication either. I felt it was worth a try. Just wanted to pass along my experience.

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