1. < Autoimmune Diseases

Oral lichen Planus: What home remedies or medications help you?

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?

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rashida | @rashida | Aug 27, 2022
In reply to @frane1939 "I was diagnosed with lichen planus many years ago. I was given Fluocinonide gel USP, 0.05%...." + (show)
@frane1939

I was diagnosed with lichen planus many years ago. I was given Fluocinonide gel USP, 0.05%. I works overnight like a charm. I will not go anywhere for too long without taking it with me. It was found that I bite the inside of my check at times especially if I chew gum. I no longer chew gum. As we age, our muscles begin to sag (yes even in our face), and as a result we have to pay attention to our back teeth wearing and getting sharper around the edges. The dentist can round the sharp edges off. I know just how painful it is when we get the open sores in our mouth. As an FYI, should you get the script for the Fluocinonide, you will read that it is for external use only. Since everything we put on externally goes into our pores and into our body, I was not worried about reading "For external Use only". I am sure the Oral Surgeon would not have prescribed it if he felt there was danger in using it in my mouth. Good luck.

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Frane1939 - yes, Fluocinonide gel 0.05% (brand name Lyderm) does work great - but it took seven to ten days to clear my oral lichen planus. I too was worried that it was “For External Use Only” but my pharmacist told me it can be used “off label”.

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1 reply
rashida | @rashida | Aug 27, 2022
In reply to @bustrbrwn22 "@lichenplanussufferer Hi. Did you have lichen anywhere else on your body besides your mouth?" + (show)
@bustrbrwn22

@lichenplanussufferer Hi. Did you have lichen anywhere else on your body besides your mouth?

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@busterbrwn22 - I did. I had it in my vaginal/anal area too, and the Fluocinonide 0.05% gel (brand name Lyderm) applied inside my mouth only, cleared that area too.

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rashida | @rashida | Aug 27, 2022
In reply to @bustrbrwn22 "@maryz 37 years? Do you go through remission years or is it always popping up somewhere?..." + (show)
@bustrbrwn22

@maryz 37 years? Do you go through remission years or is it always popping up somewhere? None of the nurses I knew and even the first dermatologist I went to had even heard of lichen. I had my first breakout about 1.5 years ago and the only places it wasn’t was where people could see like my face and hands. I had sores on my scalp thank god covered by hair but my hair did thin for a little while. I was seeing a dermatologist who kept saying it was the soap I was using and to come back in 6 months and another 6 months. It was a hot July day when my neighbor a nurse saw the blisters between my toes and the sores all over my calves and was clearly grossed out. She said “you need to go to a different dermatologist asap this is not a soap allergy. There’s more doctors involved but I’m boring myself. Did they even know what LP was 30 years ago????

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@bustrbrwn22 - it’s amazing how little doctors know about lichen planus. I finally got the Fluocinonide 0.05% from an Oral Pathologist - and it worked!

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3 replies
bustrbrwn22 | @bustrbrwn22 | Aug 27, 2022
In reply to @rashida "@bustrbrwn22 - it’s amazing how little doctors know about lichen planus. I finally got the Fluocinonide..." + (show)
@rashida

@bustrbrwn22 - it’s amazing how little doctors know about lichen planus. I finally got the Fluocinonide 0.05% from an Oral Pathologist - and it worked!

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@maryz. I am so happy for you! Unfortunately mine keeps popping up in new sites. In a way my years of experience with this “unknown” disease has been helpful as I am able to share my knowledge with newly diagnosed people as it appears to be a side effect for some from the covid vaccines. I don’t wish it on anyone.

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1 reply
rashida | @rashida | Aug 27, 2022
In reply to @joybringer1 "@rashida, I do not have your specific medical issue, but for my burning mouth syndrome, I..." + (show)
@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 - my lichen planus does not cause the burning of my tongue and mouth, it’s @cmtg who suffers from this. I get sores on my cheeks and gums and my whole mouth feels like I have hundreds of razor cuts, making it difficult to eat or drink.

Thankfully after the last flare, Fluocinonide gel 0.05% (brand name Lyderm gel) cleared it all.

Isn’t Clonazepam prescribed for anxiety?

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2 replies
rashida | @rashida | Aug 27, 2022
In reply to @microgirl "Hello, everyone, I am new to Lichen planus. About a year or so ago, my dentist..." + (show)
@microgirl

Hello, everyone,
I am new to Lichen planus. About a year or so ago, my dentist commented on my gums that they were so red that this must be lichen planus, but he thought it weird that only areas of my gums were "fire engine" red! He said to watch it for a few weeks and call back if still red-I called back and I am not certain the message was relayed to him. I was not in discomfort so I let it go-had never heard of lichen planus, so on with life!
My next dentist appointment, he was alarmed that my gums looked so inflamed and gums recessed. I was sent to a periodontist who cleaned the roots of all my teeth and I am set up to have my teeth cleaned every 3 months alternating between the dentist and periodontist. He did a biopsy which confirmed erosive lichen planus and referred me to a specialist. Now I am alarmed-they were all so empathetic at the periodontist encouraging me that the gum tissue had improved after the root cleaning and I was feeling more positive!
My appointment with the specialist left me numb! He's a dermatologist and dentist. He looked at my mouth and said that it "was a mess"!
"We'll have to treat this aggressively"! So began clobetasol and minocycline daily and I ended up with oral thrush!!! They backed off the clobetasol to every other day. At three months, he was pleased with the results and removed the minocycline and added an "anti-rejection" medicine rinse. He checked and said I also have it vaginally! I am using another cream there.
My tongue often feels like it's been scraped. My husband and I had been going through a rough patch, but had just begun to iron things out and wanted to return to intimacy but the pain is incredible!
I am looking for advice, empathy, a place to share and find answers. I am frightened as this increases the chance of squamous cell carcinoma and I have had two spots removed elsewhere prior to the LP.
Thank you for any help
microgirl

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@microgirl ask your doctor to prescribe Fluocinonide gel 0.05% (brand name Lyderm gel) for your mouth. My recent flare was brutal but in about ten days or less not only my mouth cleared up but also the lichen planus in my vaginal/anal area too, even though I only applied it in my mouth.

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rashida | @rashida | Aug 27, 2022
In reply to @artist01 "@rashida I just posted @johnbishop about toothpaste. We both use Arm and Hammer. It's excellent for..." + (show)
@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 someone on one of these lichen planus threads said she uses Crest Kids toothpaste. I did try it and it certainly eased the soreness, although the Fluocinonide gel was what finally cleared it after my last flare up early this year.

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1 reply
bustrbrwn22 | @bustrbrwn22 | Aug 27, 2022
In reply to @rashida "@joybringer1 - my lichen planus does not cause the burning of my tongue and mouth, it’s..." + (show)
@rashida

@joybringer1 - my lichen planus does not cause the burning of my tongue and mouth, it’s @cmtg who suffers from this. I get sores on my cheeks and gums and my whole mouth feels like I have hundreds of razor cuts, making it difficult to eat or drink.

Thankfully after the last flare, Fluocinonide gel 0.05% (brand name Lyderm gel) cleared it all.

Isn’t Clonazepam prescribed for anxiety?

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@rashida. Yes clonazepam is for anxiety but many researchers believe LP is caused or exacerbated by anxiety. There appears to be more prevalence of LP and therefore research of it in India. Their literature recommends the patient be put on 10 mg of diazepam as a course of treatment to see if that halts the spreading of this disease as it can go to almost every part of the body.

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bustrbrwn22 | @bustrbrwn22 | Aug 28, 2022
In reply to @rashida "@bustrbrwn22 - it’s amazing how little doctors know about lichen planus. I finally got the Fluocinonide..." + (show)
@rashida

@bustrbrwn22 - it’s amazing how little doctors know about lichen planus. I finally got the Fluocinonide 0.05% from an Oral Pathologist - and it worked!

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To any interested Erosive OLP sufferers - when I have very severe flairs I find I can use Cleure brand toothpaste well. It doesn’t have fluoride, which appears to be a trigger for mine, but it also doesn’t have any SLS either. I have LP throughout my body and use a number of Cleure products.

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joybringer1 | @joybringer1 | Aug 28, 2022
In reply to @rashida "@joybringer1 - my lichen planus does not cause the burning of my tongue and mouth, it’s..." + (show)
@rashida

@joybringer1 - my lichen planus does not cause the burning of my tongue and mouth, it’s @cmtg who suffers from this. I get sores on my cheeks and gums and my whole mouth feels like I have hundreds of razor cuts, making it difficult to eat or drink.

Thankfully after the last flare, Fluocinonide gel 0.05% (brand name Lyderm gel) cleared it all.

Isn’t Clonazepam prescribed for anxiety?

Jump to this post

@rashida, yes Clonazepam is prescribed for anxiety, but in my case it is prescribed for my burning mouth syndrome. The head of oral pathology at our local dental school prescribed this and said it was the only med that helped his patients. Now my PCP prescribes this and it does help. I am glad you found something to help with your problem. With all good wishes, @joybringer1

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