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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Mentor
Becky, Volunteer Mentor | @becsbuddy | Jan 28, 2019
In reply to @jshdma "@alpaca There may be no cure for autoimmune diseases, but there are some adequate treatments for..." + (show)
@jshdma

@alpaca There may be no cure for autoimmune diseases, but there are some adequate treatments for other conditions in this category (e.g., diabetes). The several doctors in my experience know nothing about these conditions (especially BMS), and want nothing to do with them. A top specialist in oral pathology in NYC told me there is nothing to do with BMS, it usually goes away by itself, except sometimes it doesn't. And so I was dismissed.

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@jshah the specialist sounds very rude! Have you thought about a dental specialist? He/she might have some ideas or know of a good doctor to send you to. A dentist who’s been around for awhile. I’ve used the dexamethazone mouthwash for tongue ulcers from steroids. It’s expensive, but it works

REPLY
1 reply
march13 | @march13 | Jan 28, 2019
In reply to @alpaca "@jshdma I don't think there is a cure for autoimmune diseases. As far as I know..." + (show)
@alpaca

@jshdma I don't think there is a cure for autoimmune diseases. As far as I know lichen planus is such a disease. From what I can see here the combination of the dexamethasone mouthwash and nystatin sounds like good advice. I acknowledge that these conditions are just plain awful.

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I have been using this combination for 10 years and I am able to control oral LP. If I’m having an outbreak, rinse mouth 4 times a day. Only one doctor that I know of in this big city handles oral LP. Very sad. In response to LP being a autoimmune disease,it has not been proven.

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1 reply
jshdma | @jshdma | Jan 28, 2019
In reply to @becsbuddy "@jshah the specialist sounds very rude! Have you thought about a dental specialist? He/she might have..." + (show)
@becsbuddy

@jshah the specialist sounds very rude! Have you thought about a dental specialist? He/she might have some ideas or know of a good doctor to send you to. A dentist who’s been around for awhile. I’ve used the dexamethazone mouthwash for tongue ulcers from steroids. It’s expensive, but it works

Jump to this post

@becsbuddy Thanks for the suggestion. Yes, I have been to a couple of dentists, who have no useful suggestions. The specialist in question was a dentist!

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1 reply
march13 | @march13 | Jan 28, 2019
In reply to @jshdma "@becsbuddy Thanks for the suggestion. Yes, I have been to a couple of dentists, who have..." + (show)
@jshdma

@becsbuddy Thanks for the suggestion. Yes, I have been to a couple of dentists, who have no useful suggestions. The specialist in question was a dentist!

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My dentist I use for LP is the only one in the large city Jacksonville, FL. I was very fortunate to find him. Most dentists and doctors don’t have any idea how to treat LP of the mouth.

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Maureen, Alumna Mentor | @alpaca | Jan 28, 2019
In reply to @march13 "I have been using this combination for 10 years and I am able to control oral..." + (show)
@march13

I have been using this combination for 10 years and I am able to control oral LP. If I’m having an outbreak, rinse mouth 4 times a day. Only one doctor that I know of in this big city handles oral LP. Very sad. In response to LP being a autoimmune disease,it has not been proven.

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@march13. Thanks for your reply. I'm out of date with OLP. Funnily enough I have evidence of it now but the serious OLP on my part was in the 2000s and since then I have not kept up with it. I'm glad there are some practioners who know how to deal with it. Back in 2007 in my country there seemed to be no one. I wrote to the national dental school in desperation.

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Maureen, Alumna Mentor | @alpaca | Jan 29, 2019
In reply to @jshdma "@alpaca There may be no cure for autoimmune diseases, but there are some adequate treatments for..." + (show)
@jshdma

@alpaca There may be no cure for autoimmune diseases, but there are some adequate treatments for other conditions in this category (e.g., diabetes). The several doctors in my experience know nothing about these conditions (especially BMS), and want nothing to do with them. A top specialist in oral pathology in NYC told me there is nothing to do with BMS, it usually goes away by itself, except sometimes it doesn't. And so I was dismissed.

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@jshdma I heard the same thing about OLP 10 - 15 years ago. My mother had lupus. Cortisone relieves symptoms but long term causes huge problems. I will ask an oral medicine specialist here in NZ about BMS when I see her next. I'm a patient rep on a committee she is on. She is not the sort of person to give up on people.

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2 replies
jshdma | @jshdma | Jan 30, 2019
In reply to @alpaca "@jshdma I heard the same thing about OLP 10 - 15 years ago. My mother had..." + (show)
@alpaca

@jshdma I heard the same thing about OLP 10 - 15 years ago. My mother had lupus. Cortisone relieves symptoms but long term causes huge problems. I will ask an oral medicine specialist here in NZ about BMS when I see her next. I'm a patient rep on a committee she is on. She is not the sort of person to give up on people.

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@alpaca Thanks. If you ever hear anything about treating (fixing) BMS I'm sure many people would love to know about it!

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Maureen, Alumna Mentor | @alpaca | Jan 30, 2019

@jshdma I have emailed my oral med specialist contact and she said she would seek out one of her contacts in the US for you if you could tell me what part of the world you reside in. She says these are difficult to treat but as I said, she is a very dogged specialist and there's a tiny little chance that something like this could help.

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1 reply
fancyrph | @fancyrph | Jan 30, 2019
In reply to @ckeys "I have oral like in planus following a stem cell transplant. Or use a combination of..." + (show)
@ckeys

I have oral like in planus following a stem cell transplant. Or use a combination of swish and spit dexamethasone (steroid) and Nystatin for yeast because the steroids can create yeast growth. Because I don’t swallow the steroid, I don’t get the impacts on my whole body, just my mouth. I also drink a lot of water all day. I find iced water keeps inflammation and pain down. It has all helped keep the lichen planus controlled and I don’t get so many erosive episodes. I rinse twice a day with the dexamethasone, up to four times when I have a flair. Or use the nystatin as needed when I get a used bloom. Hope this helps someone.

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I am now also using a compounded prescription of viscous lidocaine & dexamethasone made by my compounding pharmacist sister. The flare up I was as having is controlled for now. Second day of no pain with eating. Put soup on hold for a few days. Good to get some relief. Still using coconut oil swishes. Melatonin has helped me in the past too by reducing stress & causing me to be calmer about things.

REPLY
jshdma | @jshdma | Jan 31, 2019
In reply to @alpaca "@jshdma I have emailed my oral med specialist contact and she said she would seek out..." + (show)
@alpaca

@jshdma I have emailed my oral med specialist contact and she said she would seek out one of her contacts in the US for you if you could tell me what part of the world you reside in. She says these are difficult to treat but as I said, she is a very dogged specialist and there's a tiny little chance that something like this could help.

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@alpaca- thank you very much. I live in New York City area. I recognize the response that these things [OLP and BMS] are "very difficult to treat." But I will try anyone who will thinks it can be done. The problem must be that the cause is not known and no one will research it.

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