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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ayesha7 | @ayesha7 | Jan 20, 2019

I used that too but then my insurance decided it was a compound and no longer would cover it . I couldn't afford to just pay for it so had to stop using it ....I have had this condition for fourteen years now without any treatment. I also have bladder cancer. My gums have all deteriorated from this condition and i am getting cavities in all my roots and my teeth are loosening. No one (dentists) knows how to treat erosive oral lichen planus . They have little knowledge on it and dont really care about your quality of life. bottom line

REPLY
3 replies
fancyrph | @fancyrph | Jan 20, 2019
In reply to @ayesha7 "I used that too but then my insurance decided it was a compound and no longer..." + (show)
@ayesha7

I used that too but then my insurance decided it was a compound and no longer would cover it . I couldn't afford to just pay for it so had to stop using it ....I have had this condition for fourteen years now without any treatment. I also have bladder cancer. My gums have all deteriorated from this condition and i am getting cavities in all my roots and my teeth are loosening. No one (dentists) knows how to treat erosive oral lichen planus . They have little knowledge on it and dont really care about your quality of life. bottom line

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Sorry to hear this. Have you tried swishing with coconut oil? It might give you some relief, especially before eating. My oral surgeon ordered Lidex gel for me to use. It does burn because it’s not made for use in mouth but it’s a steroid so may be an option. I have erosive lesions all the time. I had started using melatonin a few months ago & it seemed to have improved. For about 6 weeks I got some relief. It’s tolerable for now. I think you can get straight dexamethasone as a prescription without being compounded if a doc will order it. Best to you

REPLY
fancyrph | @fancyrph | Jan 20, 2019
In reply to @ayesha7 "I used that too but then my insurance decided it was a compound and no longer..." + (show)
@ayesha7

I used that too but then my insurance decided it was a compound and no longer would cover it . I couldn't afford to just pay for it so had to stop using it ....I have had this condition for fourteen years now without any treatment. I also have bladder cancer. My gums have all deteriorated from this condition and i am getting cavities in all my roots and my teeth are loosening. No one (dentists) knows how to treat erosive oral lichen planus . They have little knowledge on it and dont really care about your quality of life. bottom line

Jump to this post

I have tried everything under the sun almost which I listed on my very first post to this group. Check it out. Right now I’m using a DIY mixture of coconut oil & aloe Vera & stir in some Lidex steroid gel. Since the landscape of the tissue in the mouth is now different, I use coconut oil to cut down on friction & rubbing as source of pain & potential flare up.

REPLY
Maureen, Alumna Mentor | @alpaca | Jan 20, 2019
In reply to @ayesha7 "I used that too but then my insurance decided it was a compound and no longer..." + (show)
@ayesha7

I used that too but then my insurance decided it was a compound and no longer would cover it . I couldn't afford to just pay for it so had to stop using it ....I have had this condition for fourteen years now without any treatment. I also have bladder cancer. My gums have all deteriorated from this condition and i am getting cavities in all my roots and my teeth are loosening. No one (dentists) knows how to treat erosive oral lichen planus . They have little knowledge on it and dont really care about your quality of life. bottom line

Jump to this post

Oral steroids, Prednisone (?) work really well but of course it is not good to take long term. I had it for relief of pain during an overseas trip.

REPLY
1 reply
fancyrph | @fancyrph | Jan 21, 2019
In reply to @alpaca "Oral steroids, Prednisone (?) work really well but of course it is not good to take..." + (show)
@alpaca

Oral steroids, Prednisone (?) work really well but of course it is not good to take long term. I had it for relief of pain during an overseas trip.

Jump to this post

I was on a small dose of prednisone for a year that didn’t help one bit. Then got osteopenia in lower spine from it. I’ve taken a Medrol dosepak several times. I think initially I got some minor relief. Stopping the NSAID MOBIC made all the difference in the world. Have a lot less pain now.

REPLY
1 reply
jshdma | @jshdma | Jan 22, 2019
In reply to @fancyrph "I was on a small dose of prednisone for a year that didn’t help one bit...." + (show)
@fancyrph

I was on a small dose of prednisone for a year that didn’t help one bit. Then got osteopenia in lower spine from it. I’ve taken a Medrol dosepak several times. I think initially I got some minor relief. Stopping the NSAID MOBIC made all the difference in the world. Have a lot less pain now.

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@fancyrph What is MOBIC? Thanks for defining.

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2 replies
Mentor
John, Volunteer Mentor | @johnbishop | Jan 22, 2019
In reply to @jshdma "@fancyrph What is MOBIC? Thanks for defining." + (show)
@jshdma

@fancyrph What is MOBIC? Thanks for defining.

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@jshdma, MOBIC (meloxicam) is a nonsteroidal anti-inflammatory drug (NSAID).

https://www.rxlist.com/mobic-drug.htm
REPLY
fancyrph | @fancyrph | Jan 22, 2019
In reply to @jshdma "@fancyrph What is MOBIC? Thanks for defining." + (show)
@jshdma

@fancyrph What is MOBIC? Thanks for defining.

Jump to this post

MOBIC is the brand name for a non-steroidal anti-inflammatory drug (NSAID) meloxicam. Similar to ibuprofen/Motrin or Advil over the counter or Naproxen. NSAIDs have uses for a many different types of pain such as arthritis, dental pain, pms, etc but are not without adverse side effects.

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2 replies
jshdma | @jshdma | Jan 22, 2019
In reply to @fancyrph "MOBIC is the brand name for a non-steroidal anti-inflammatory drug (NSAID) meloxicam. Similar to ibuprofen/Motrin or..." + (show)
@fancyrph

MOBIC is the brand name for a non-steroidal anti-inflammatory drug (NSAID) meloxicam. Similar to ibuprofen/Motrin or Advil over the counter or Naproxen. NSAIDs have uses for a many different types of pain such as arthritis, dental pain, pms, etc but are not without adverse side effects.

Jump to this post

@fancyrph @johnbishop thanks for clarifying. This is one I had never heard about.

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Maureen, Alumna Mentor | @alpaca | Jan 22, 2019
In reply to @fancyrph "MOBIC is the brand name for a non-steroidal anti-inflammatory drug (NSAID) meloxicam. Similar to ibuprofen/Motrin or..." + (show)
@fancyrph

MOBIC is the brand name for a non-steroidal anti-inflammatory drug (NSAID) meloxicam. Similar to ibuprofen/Motrin or Advil over the counter or Naproxen. NSAIDs have uses for a many different types of pain such as arthritis, dental pain, pms, etc but are not without adverse side effects.

Jump to this post

@jshdma So the MOBIC made the lichen planus worse?

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