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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@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

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@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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@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

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@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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@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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@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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@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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@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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@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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@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.

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@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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@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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My throat concerns me as much as my burning mouth now. I don’t know whether to think the BMS has moved into my throat or if acid reflux is so bad that it’s causing my throat to be on fire? Does anyone with burning mouth syndrome have the same problem in their throat?

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@jshdma

@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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Hello@jshdma Here is a recommended oral medicine specialist in NY. My contact is a dedicated oral medicine specialist with both dental and medical quals. She recommends seeing such a person for OLP and BMS. You might already know all this! It's just that Kim, my contact here in NZ, is not the sort of person to wash her hands of people in distress so I tend to listen to what she says.( I don't see her as a patient but as consumer rep on a hospital committee.)

Dentist in NY

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@alpaca

Hello@jshdma Here is a recommended oral medicine specialist in NY. My contact is a dedicated oral medicine specialist with both dental and medical quals. She recommends seeing such a person for OLP and BMS. You might already know all this! It's just that Kim, my contact here in NZ, is not the sort of person to wash her hands of people in distress so I tend to listen to what she says.( I don't see her as a patient but as consumer rep on a hospital committee.)

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@alpaca Many thanks for this reference. I will certainly contact this person. Yes, I would have thought these conditions would be in the realm of oral medicine, although a top specialist in oral medicine told me there is nothing to do. Several years ago an ENT doctor did at least offer treatment. I did not want to go on long-term with steroids.

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@elizabethbryant

I have Oral Lichen Planus which is the immune system attacking tissue under the tongue. The Lichen Planus spread when I was under stress in the
last 4 weeks and has anyone heard of a cure for this condition. I had this under my tongue on the right side in 2016 and it turned into cancer.
When we had a family emergency, my children nor I realized the stress would create lichen planus on the left side under tongue, It has become
to painful to talk or chew food. I was doing great until the stress hit, really getting better as unbelievable as it was to the doctor. ENT Surgeon.
HELP!!!!!! anyone. The type of lichen planus I have is not virus related.

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I too have had oral lichen planus under one side of my tongue for many years. Last year I was diagnosed with chronic kidney disease and the nephrologist rx’d Calcitriol to supplement OTC vitamin D that I was taking for osteoporosis, even though my calcium level was normal. A few weeks later, I noticed that my lesions were much improved. Mentioned this to my dentist (who first discoversed it) and he asked if anything had changed in meds and the only thing was the Calcitriol. I definitely credit this med with relieving me of all symptoms. It was a beneficial side effect for sure.

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