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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spondee | @spondee | Apr 26, 2023
In reply to @microgirl "Good morning Maryz, I am about 6 months into treatment for OLP and vag lp. You..." + (show)
@microgirl

Good morning Maryz,
I am about 6 months into treatment for OLP and vag lp. You have so much experience I wanted to ask you about symptoms. I am doing clobetazol 4x week and a liquid concoction of an anti-rejection medication. Some days my gums look "fine" and then they're flaming. I have had episodes of thrush. I am really frustrated. Before my diagnosis with biopsy, I had no lesions, no burning tongue-my dentist just seemed concerned that my gums were so red. He suspected lp and sent me to a specialist and my world turned upside down. Did you go through any allergy testing? I have some metal fillings-the specialist said, no that's not the cause, but I am considering having those replaced just in case it might make a difference. I am not satisfied treating the symptoms-I would like to know the cause and address that. what are your thoughts?

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This is a mysterious autoimmune disease and usually the docs don't speak of causes but of triggers. Any old virus may trigger it--and Covid is a culprit, along with the flu and even maybe the vaccines for viral disorders. After all, vaccines elicit an immune response--and an immune response can be an autoimmune response too.

It is possible that a person has a non-symptomatic OLP condition that suddenly flares after an autoimmune response to a vaccine or an actual viral infection. I don't think I am saying anything controversial here. Drugs are also said to trigger OLP, in particular beta blockers and ace inhibitors but also NSAIDS--which is pretty wild. If you are using such drugs, consider tapering off.

I'm an OLP sufferer, not a doctor, but I've been researching like crazy. It is just so hard to find a dentist or a doctor who knows anything at all about OLP.

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3 replies
spondee | @spondee | Apr 26, 2023
In reply to @lichenplanussufferer "I have had Lichen Planus for over 2 years on my gums with extreme bleeding. A..." + (show)
@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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Valtrex is for herpes. I don't get it. If this is a cure, it should be on the cover of the New England Journal of Medicine.

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susanjeanmom | @susanjeanmom | Apr 27, 2023
In reply to @spondee "This is a mysterious autoimmune disease and usually the docs don't speak of causes but of..." + (show)
@spondee

This is a mysterious autoimmune disease and usually the docs don't speak of causes but of triggers. Any old virus may trigger it--and Covid is a culprit, along with the flu and even maybe the vaccines for viral disorders. After all, vaccines elicit an immune response--and an immune response can be an autoimmune response too.

It is possible that a person has a non-symptomatic OLP condition that suddenly flares after an autoimmune response to a vaccine or an actual viral infection. I don't think I am saying anything controversial here. Drugs are also said to trigger OLP, in particular beta blockers and ace inhibitors but also NSAIDS--which is pretty wild. If you are using such drugs, consider tapering off.

I'm an OLP sufferer, not a doctor, but I've been researching like crazy. It is just so hard to find a dentist or a doctor who knows anything at all about OLP.

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I had all my shots and then got Covid. I believe my OLP was brought on by this perfect storm. Ty for sharing

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Mentor
Becky, Volunteer Mentor | @becsbuddy | Apr 27, 2023
In reply to @spondee "This is a mysterious autoimmune disease and usually the docs don't speak of causes but of..." + (show)
@spondee

This is a mysterious autoimmune disease and usually the docs don't speak of causes but of triggers. Any old virus may trigger it--and Covid is a culprit, along with the flu and even maybe the vaccines for viral disorders. After all, vaccines elicit an immune response--and an immune response can be an autoimmune response too.

It is possible that a person has a non-symptomatic OLP condition that suddenly flares after an autoimmune response to a vaccine or an actual viral infection. I don't think I am saying anything controversial here. Drugs are also said to trigger OLP, in particular beta blockers and ace inhibitors but also NSAIDS--which is pretty wild. If you are using such drugs, consider tapering off.

I'm an OLP sufferer, not a doctor, but I've been researching like crazy. It is just so hard to find a dentist or a doctor who knows anything at all about OLP.

Jump to this post

@spondee You’ve really been researching! Have you tried going to a major medical center or a university hospital? They usually have research departments and doctors who are interested in research. You could try googling ‘major medical centers in ___________’.
Have you read through this whole discussion? Many people have suggestions.
Will you keep me informed?

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debzle64 | @debzle64 | Jul 14, 2023

Only just found out about my OLP after a few weeks of suffering. Just started gargling Betamethasone 4 times a day. Calms the burn. Anyone else using this ?
And any advice about liquid supplements during an attack ?

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5 replies
rashida | @rashida | Jul 15, 2023
In reply to @debzle64 "Only just found out about my OLP after a few weeks of suffering. Just started gargling..." + (show)
@debzle64

Only just found out about my OLP after a few weeks of suffering. Just started gargling Betamethasone 4 times a day. Calms the burn. Anyone else using this ?
And any advice about liquid supplements during an attack ?

Jump to this post

@debzle64 Ask your doctor to prescribe you Lyderm gel. There is no cure for oral lichen planus but the Lyderm gel cleared my mouth in about ten days. Now I only use it when I have flare ups which sometimes don’t happen for as long as six months or more.

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1 reply
debzle64 | @debzle64 | Jul 15, 2023
In reply to @rashida "@debzle64 Ask your doctor to prescribe you Lyderm gel. There is no cure for oral lichen..." + (show)
@rashida

@debzle64 Ask your doctor to prescribe you Lyderm gel. There is no cure for oral lichen planus but the Lyderm gel cleared my mouth in about ten days. Now I only use it when I have flare ups which sometimes don’t happen for as long as six months or more.

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Thanks. I’ll bear that in mind at my next appointment. X

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Mentor
John, Volunteer Mentor | @johnbishop | Jul 15, 2023
In reply to @debzle64 "Only just found out about my OLP after a few weeks of suffering. Just started gargling..." + (show)
@debzle64

Only just found out about my OLP after a few weeks of suffering. Just started gargling Betamethasone 4 times a day. Calms the burn. Anyone else using this ?
And any advice about liquid supplements during an attack ?

Jump to this post

Hello @debzle64, I would like to add my welcome to Connect along with @rashida and others. There is another discussion you may also find helpful here:

--- Oral lichen Planus: What home remedies or medications help you?: https://connect.mayoclinic.org/discussion/oral-lichen-planus-3/

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spondee | @spondee | Jul 15, 2023

Slow in responding, sorry. I live in NYC so there are major medical centers galore. I found a doctor who specializes in OLP (and other things) in a practice associated with NYU. He prescribed the usual: a topical corticosteroid, and it has helped. Now to the science:

A layperson like myself isn't allowed to read the medical journals. However, an Australian journal allows us to read old articles and I found one from 2002 which explains the whole etiology and histology of OLP. It's core science and I'm confident that it is still sound information. The most interesting info for me is introduced on the first page and explained in full later: "OLP chronicity [translation: chronic nature] may be due, in part, to deficient antigen-specific TGF-β1-mediated immunosuppression." Now TGF-β1= TGF-Beta 1. So this explains why beta blocker meds may lead to OLP. With a beta blocker like Metoprolol (the drug I'm taking), you are literally blocking Beta 1, the very substance that mediates--or prevents--OLP!

I tried to introduce this info to my cardiologist and my dentist and neither seemed willing to listen. Doctors are not scientists! And some doctors are unwilling to learn from patients.

Here is the link to the paper, The Pathogenesis of Oral Lichen Planus. I warn you, it is very long, difficult, and arcane for a layperson!
https://journals.sagepub.com/doi/10.1177/154411130201300405
I am trying to wean myself off the beta blocker and am taking 75% less of it than a year ago. That strategy, has helped immensely, along with the corticosteroid, but I know I am not out of the woods with this chronic condition.

I've found the toothpaste recommendations interesting and the one I prefer is one mentioned, Cleure brand, which is a bit pricey but worth it. Available on Amazon. This toothpaste is soothing and has no flavor whatsoever. You could enjoy wine, coffee, orange juice immediately after use!

I also swish with Aloe Vera gel and coconut oil, both very soothing. Good luck, everyone. Let's keep the discussion going.

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1 reply
debzle64 | @debzle64 | Jul 15, 2023
In reply to @spondee "This is a mysterious autoimmune disease and usually the docs don't speak of causes but of..." + (show)
@spondee

This is a mysterious autoimmune disease and usually the docs don't speak of causes but of triggers. Any old virus may trigger it--and Covid is a culprit, along with the flu and even maybe the vaccines for viral disorders. After all, vaccines elicit an immune response--and an immune response can be an autoimmune response too.

It is possible that a person has a non-symptomatic OLP condition that suddenly flares after an autoimmune response to a vaccine or an actual viral infection. I don't think I am saying anything controversial here. Drugs are also said to trigger OLP, in particular beta blockers and ace inhibitors but also NSAIDS--which is pretty wild. If you are using such drugs, consider tapering off.

I'm an OLP sufferer, not a doctor, but I've been researching like crazy. It is just so hard to find a dentist or a doctor who knows anything at all about OLP.

Jump to this post

I agree with your thoughts on COVID and all that goes with it. The world has been exposed to a lot in a short space of time. It must take a toll on the immune system. X

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