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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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janruth | @janruth | Jan 19 4:18pm
In reply to @sadea0208 "Hi, I have OLP also! It's painful for me also! In addition to the lesions, the..." + (show)
@sadea0208

Hi,
I have OLP also! It's painful for me also! In addition to the lesions, the tissue in my mouth feels like it was sanded with coarse sandpaper!!!!
I'm not familiar with cyclosporine treatment for OLP. I use a dexamethasone mouth rinse when my mouth gets really bad. It can only be used for 10 days at a time! It helps!! I also have the Lidocaine rinse which helps for about 7 minutes!! LoL
I haven't taken oral Dexamethasone (steroid) yet. I won't take them unless I absolutely have to. The side effects can be very challenging.
I also have LP on my skin and I have Esophageal Lichen Planus which is "extremely" rare. ELP is so rare it's impossible to find a doctor that has ever had a patient with it.
I wish the best! I hope the rheumatologist will be able to help you!

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The rheumatologist appointment isn't until March, but will let everyone know its outcome. If I know I'm going out to a meal, I swish with Magic Mouthwash and take an ibuprofen. It helps for awhile. I look perfectly normal(!), no one would know what a mess my mouth is.

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