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