1. < Autoimmune Diseases

Erosive oral lichen planus

Posted by germany2 @germany2, Mar 20, 2017

Hello
I'm new to the group. I was diagnosed with erosive lichen planus 4 years ago and it has been a nightmare since. Mine has progressed from my mouth to my esophagus, nose and eyes. I've seen so many doctors @ Vanderbilt and St Thomas Hospital who have no idea how to treat my illness. I've. Even advised to go to the Mayo Clinic in Rochester but I'm really not sure what doctor or doctors have experience with treating this disease. Any help would be appreciated
Thanks

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joyatbells | @joyatbells | Jul 23, 2022

My dermatologist suggested hydroxychloroquine, but i was afraid of the side effects. I will have to ask about the lyderm gel.
Thank you

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1 reply
rashida | @rashida | Jul 24, 2022
In reply to @joyatbells "My dermatologist suggested hydroxychloroquine, but i was afraid of the side effects. I will have to..." + (show)
@joyatbells

My dermatologist suggested hydroxychloroquine, but i was afraid of the side effects. I will have to ask about the lyderm gel.
Thank you

Jump to this post

@joyatbells - Lyderm gel (comes in paste form too, but gel is better applied in the mouth) is a steroid and may have side effects too because my doctor said it should not be taken for more than seven to ten days.

Someone in one of these threads said she used kid’s toothpaste and it helped with the burning when brushing her teeth so I got Crest kid’s toothpaste while I waited for my appointment with the specialist, and that did make brushing teeth more comfortable.

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2 replies
debzle64 | @debzle64 | Jul 17, 2023
In reply to @maryz "It has been a while since my last post. I Live in Arizona and found two..." + (show)
@maryz

It has been a while since my last post. I Live in Arizona and found two very helpful treatments that have helped my with my OLP. I am scheduled quarterly with Dr Seena Patel DMD MPH in Phoenix. I have very painful OLP on the inside of my mouth on both sides. I have a micro dose of Cortisone injected to the lesions on both sides of my mouth if needed; or one side I only need one. She also checks for any changes in my mouth and throat. I have my teeth cleaned quarterly. I avoid all dairy products as prescribed by my former Specialist in San Francisco. I am now able to manage the pain and eat better. I walk about 2 miles a day and work at the gym every other day to maintain strength. It is still difficult and slow to eat but I am very happy about the OLP pain reduction. I also have Vaginal LP. The medical treatment there is one of the steroid creams. It helps with the pain. My concern as always is the fear that any of these lesions could turn to cancer. However I do have confidence that I am getting great treatment. The best I have had in the 40 since I was diagnosed with LP. I wish you good luck and less pain! Mary.

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How are u doing now Mary ? X

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BeBold | @bebold | Jul 18, 2023
In reply to @rashida "@joyatbells - Lyderm gel (comes in paste form too, but gel is better applied in the..." + (show)
@rashida

@joyatbells - Lyderm gel (comes in paste form too, but gel is better applied in the mouth) is a steroid and may have side effects too because my doctor said it should not be taken for more than seven to ten days.

Someone in one of these threads said she used kid’s toothpaste and it helped with the burning when brushing her teeth so I got Crest kid’s toothpaste while I waited for my appointment with the specialist, and that did make brushing teeth more comfortable.

Jump to this post

Yup. I've come to like bubble gum flavored toothpaste.
At Easter I got kids toothpaste that tasted like the yellow marshmallow rabbits. (I lose words!) The ones that taste way better if they're stale. Checking out new kids flavored toothpaste can be fun around the holidays.

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janruth | @janruth | Jan 17 10:45am

My doctor just referred me to a rheumatologist. I'm hoping for some help with oral lichen planus. I have sores in my mouth that make it hard to chew. Hurts a lot. Have tried cyclosporine. Still on it but don't notice s difference.

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1 reply
janruth | @janruth | Jan 17 10:48am
In reply to @rashida "@joyatbells - Lyderm gel (comes in paste form too, but gel is better applied in the..." + (show)
@rashida

@joyatbells - Lyderm gel (comes in paste form too, but gel is better applied in the mouth) is a steroid and may have side effects too because my doctor said it should not be taken for more than seven to ten days.

Someone in one of these threads said she used kid’s toothpaste and it helped with the burning when brushing her teeth so I got Crest kid’s toothpaste while I waited for my appointment with the specialist, and that did make brushing teeth more comfortable.

Jump to this post

I use a water pik. I use warm water in the tank, lowest setting. Hold the wand close to the gum, careful in the sore areas.

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BeBold | @bebold | Jan 18 5:48am

You know, with all my pain, when I'm not hungry, I forget to notice how much pain I'm in. Like now. Weird, I have a toothache and its like NBD because its just moith pain. I'm used to mouth pain. And its only reading tgis that I'm actually realizing I have a bunch of sores.
I got my teeth cleaned (its her hands pulling on my cheeks that brings tears.) She said I had a large sore beside my tongue. I was surprised I didn't even feel it. Its normal life right now. She was like "you don't feel that?"

I also have CRPS, it crazy what pain we can get used to living with. I'm inder so much stress right now its no wonder I have a mouth full of sores. Thanks, ill do my prednisone/lidocaine swish and spit.

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sadea0208 | @sadea0208 | Jan 19 9:13am
In reply to @janruth "My doctor just referred me to a rheumatologist. I'm hoping for some help with oral lichen..." + (show)
@janruth

My doctor just referred me to a rheumatologist. I'm hoping for some help with oral lichen planus. I have sores in my mouth that make it hard to chew. Hurts a lot. Have tried cyclosporine. Still on it but don't notice s difference.

Jump to this post

Hi,
I have OLP also! It's painful for me also! In addition to the lesions, the tissue in my mouth feels like it was sanded with coarse sandpaper!!!!
I'm not familiar with cyclosporine treatment for OLP. I use a dexamethasone mouth rinse when my mouth gets really bad. It can only be used for 10 days at a time! It helps!! I also have the Lidocaine rinse which helps for about 7 minutes!! LoL
I haven't taken oral Dexamethasone (steroid) yet. I won't take them unless I absolutely have to. The side effects can be very challenging.
I also have LP on my skin and I have Esophageal Lichen Planus which is "extremely" rare. ELP is so rare it's impossible to find a doctor that has ever had a patient with it.
I wish the best! I hope the rheumatologist will be able to help you!

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1 reply
BeBold | @bebold | Jan 19 10:31am

I use my dexamethosone and lidocaine rinse together and hold it in my mouth as long as possible. Even 30 minutes if I can. I don't use it regularly so I don't think about how many days in a row. I only use it when I'm in a bad Flair and even at that I hate medicine so I might use it once a day?

I was on steroids for covid recently and I all of a sudden realize that I had no sores in my mouth either I had totally forgotten to notice! Yeah being on Prednisone is a dream except for what it does to your mind and to your bones. I also live with bipolar so I have to be really careful when I'm on prednisone. We all do. It can make you feel pretty crazy! But especially if you're bipolar be really careful because it can make you manic. I can't imagine it in my esophagus. I wish more people had heard about it. Sometimes I'm invited over to a friend's house and they're having food that I know I can't eat. I usually try and tell people I can't eat square food and they don't know what that means. Lol. Anything sharp or anything with a point. I'm also trying to be gluten free and sugar free and salt free and I'm finding there's not very much I can eat. I wish gluten free for 20 days now would show better results in my mouth but it's not
I have friends who say "oh yeah I have a cold sore on occasion - its painful." At which time we all know, we just say "yeah."

It feels unbelievable that somebody would have a gazillion cold sores inside their mouth. Have you ever felt like I wish I had one day, one hour, one minute - when I wasn't in pain someplace in my body?

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lewin | @lewin | Jan 19 11:46am

I looked at some artcles. I wanted to suggest that you go to the National Eczema Association website and facebook page. Here if the name and contact number for them. There must be some doctor who can help you. I think you need to do some research and contact this organiztion rather than looking for another doctor who may be clueless.National Eczema Association | 505 San Marin Drive, #B300 | Novato, CA 94945
415-499-3474 or 800-818-7546.

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