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

Interested in more discussions like this? Go to the Autoimmune Diseases Support Group.

destinnana | @destinnana | Feb 3, 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.

Jump to this post

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?

REPLY
1 reply
Maureen, Alumna Mentor | @alpaca | Feb 7, 2019
In reply to @jshdma "@alpaca- thank you very much. I live in New York City area. I recognize the response..." + (show)
@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.

Jump to this post

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.)
REPLY
1 reply
jshdma | @jshdma | Feb 8, 2019
In reply to @alpaca "Hello@jshdma Here is a recommended oral medicine specialist in NY. My contact is a dedicated oral..." + (show)
@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.)

Jump to this post

@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.

REPLY
kymillie | @kymillie | Feb 11, 2019
In reply to @elizabethbryant "I have Oral Lichen Planus which is the immune system attacking tissue under the tongue. The..." + (show)
@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.

Jump to this post

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.

REPLY
1 reply
jshdma | @jshdma | Feb 12, 2019
In reply to @kymillie "I too have had oral lichen planus under one side of my tongue for many years...." + (show)
@kymillie

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.

Jump to this post

@kymillie If supplementing with calcium were the solution to OLP, that would be a miracle. I've had numerous suggestions, none of which worked.

REPLY
march13 | @march13 | Feb 12, 2019
In reply to @jp53 "What resources would Mayo Clinic-MN have for evaluating L.P.? I have had to educate my local..." + (show)
@jp53

What resources would Mayo Clinic-MN have for evaluating L.P.? I have had to educate my local health care providers on the condition. At this point I would like to deal with a specialist instead of working my way up through the health care hierarchy. I have oral and vaginal involvement and now I suspect esophageal issues. I’ve dealt with this for about 4 years and I’m still waiting for the spontaneous remission!

Jump to this post

What side effect to you have with esophageal LP. I have oral LP and Vaginal sclerosis. I have had issues with ears, nose and hair.
I have recently had problems swallowing.
When I am stressed and have an outbreak it is awful. 12 years of searching for right doctors. I think I have found right doctors and treatments.

REPLY
1 reply
jshdma | @jshdma | Feb 12, 2019
In reply to @march13 "What side effect to you have with esophageal LP. I have oral LP and Vaginal sclerosis...." + (show)
@march13

What side effect to you have with esophageal LP. I have oral LP and Vaginal sclerosis. I have had issues with ears, nose and hair.
I have recently had problems swallowing.
When I am stressed and have an outbreak it is awful. 12 years of searching for right doctors. I think I have found right doctors and treatments.

Jump to this post

@march13 Please tell us about the right treatments (and doctors, if you can). Glad someone has gotten rid of this evil condition (I mean "Satanic").

REPLY
1 reply
march13 | @march13 | Feb 12, 2019
In reply to @jshdma "@march13 Please tell us about the right treatments (and doctors, if you can). Glad someone has..." + (show)
@jshdma

@march13 Please tell us about the right treatments (and doctors, if you can). Glad someone has gotten rid of this evil condition (I mean "Satanic").

Jump to this post

LP is treatable but never cured. I use Clobetasol gel for for lichen planus sclerosis on vagina, clobetasol liquid for head. For my mouth I use Dexamethasone mixed with Nystaton. This a liquid steroid and with outbreak, rinse four times a day. Breakout at different times but using these drugs have kept LP under control and of course commitment to meds and lots of patience. I go to the only dentist in the largest city in US and past year have gone to Gynocoligist for vagina. Was going to dermatologist but was not very successful. Now I find out about escophageal LP which I did know about and am shocked. Scheduled for test on throat and hope it just needs to be stretched. Problem swollling.
Have had LP on and off 12. Hope I have been of help.

REPLY
1 reply
grammlyn | @grammlyn | Feb 17, 2019

I am desperate... Does anyone know of a doctor able to treat Oral Lichen Planus in Las Vegas, or even California which is 6 hours away from me.

REPLY
3 replies
View MoreView Less
Please sign in or register to post a reply.