Erosive oral lichen planus

Hi, All, for about a year now my lips always feel swollen and painful. I have contacted my dermatologists office several times and they said they couldn't find anything wrong. I was at an appointment this last week and the doctor said if you have oral LP you will have LP of the lips. Coconut oil made it burn worse so the derm recommended vasoline but that doesn't help either. Has anyone found something that helps with the lip pain and uncomfortableness? Thanks so much.

@germany2 Hi, germany2 - I just saw this post as I was recently diagnosed with LP in my eyes (not sure of medical term for this). Have you found anything that helps this or stops the progression of eyesight loss? How is your eyesight now 2 years later? I am terrified of losing my vision.

Hello, it’s been a few years since I’ve posted ! I was put on 40mg prednisone and 3000mg Mycophenolate Mofetil I stayed on the prednisone for about 3 months then weened off of them! I’m currently still on the Mycophenolate but only 1000mg ! My eye site has stayed the same as well as my condition! I do have a couple of places with symblephron one on each eye ! If you need any more info you are welcome to send me a private message.

Hello @germany2, Thank you for returning to Connect and providing an update. You will notice that we removed your email address to protect your privacy since Connect posts can be seen by anyone on the Internet. Members can share contact information by using the private message function of Connect - How to Send a Private Message: https://connect.mayoclinic.org/get-started-on-connect/#send-private-message.

@bustrbrwn22 Hi Buster Brown. I've had very painful Oral Lichen Planus since December. Inner lips, tongue, etc. Was barely able to eat, drink, swallow, talk. After 3 or 4 doctors and about 6 types of prescriptions, I was referred to a dermatologist who firstly prescribed applying Clobetasol ointment to the lesions 4 times a day. When that failed he prescribed it's use 6 times a day. No relief. Finally, he prescribed
Protopic ointment 2 times a day. The lesions are now disappearing - slowly, The pain is gone!(hallelujah!) I've also been using Desert Essence Coconut Pulling Rinse after brushing my teeth with Arm & Hammer toothpaste, ( contains no parabens, laureate sulphate (sp) or other "bad" additives.) I'm so hopeful I've got this awful autoimmune disease under control at last. I see the dermatologist again on September 13th.
I hope this information might help you, Buster Brown! Warmly, Laurie

@artist01. Thanks so much! I actually have some tacrolimus that was prescribed for my rosacea but it burned on my face. I will try a little on my lips but I’ve seen contradicting things online. One says you can use on lips and eyelids another says you can’t. So your dermatologist was ok with using in your mouth? Then it must be ok for lips. Not sure if my eyelids are LP or rosacea. Have you ever used on eyelids? Awesome info. Thanks!!

@bustrbrwn22 Hi Buster Brown. I'm like you - very leery of using Clobetasol in my mouth, since all the accompanying pharmaceutical info warns NOT to. However, if you research online, you'll see that other doctors and dermatologists advise it's use for OLP so I was more at ease with using it orally. I'd be very cautious about using it on your eyelids though. Too close to your precious eyes! Personally, I wouldn't.
I wish you could get a definitive answer on whether it IS OLP that you have. Even using Clobetasol on your outer lips seems a little scarey to me. OLP doesn't usually affect the lips themselves. Can you not seek out a dermatologist at a teaching hospital? Using that medication without a proper diagnosis might not be a wise way to go, without knowing for sure what you're dealing with.
I use white petroleum jelly USP ointment in a tube, or even coconut oil, to help my very dry lips. Good luck, Buster Brown.

I was prescribed Betamethasone Dipropionate ointment to use on the underside of my tongue and the inside of my cheek, and it does say not to use it in the mouth, however my Pharmacist explained that it is okay. He said you use a very THIN layer of the ointment, because it will make the skin become thinner, but it IS okay to use this small amount inside your mouth.

Hello @mskatrina12, Welcome to Connect. Thanks for sharing how the Betamethasone Dipropionate ointment. It was great idea to discuss it with your pharmacist after reading the warning not to use it in your mouth. Here's some information I found on the topic.

"Aug 30, 2017 — Topical betamethasone is a valid treatment option for patients with oral lichen planus, but there are currently no randomized, controlled trials" --- Topical Clotrimazole/Betamethasone use in Oral Erosive Lichen Planus: https://www.ommegaonline.org/article-details/Topical-ClotrimazoleBetamethasone-use-in-Oral-Erosive-Lichen-Planus/870

"Oct, 2020 --- Topical rapamycin versus betamethasone dipropionate ointment for treating oral erosive lichen planus: a randomized, double-blind, controlled study." --- Topical rapamycin versus betamethasone dipropionate ointment for treating oral erosive lichen planus: a randomized, double-blind, controlled study: https://pubmed.ncbi.nlm.nih.gov/32128907/

Has the ointment helped?

No, it really hasn't helped, but I'll try anything! This has been going on for almost 2 years, but it was just recently diagnosed. In the beginning I was staying home, staying away from all Doctor & Dentist offices due to Covid, and then once I began to venture out all I got was "Try this & come back in a month." "Now try this & come back in a month." "Hmm...Wonder what it might be? Maybe I'll send you to Dr. XXX." Well, 2 months later I had an appointment with Dr. XXX, and they then called & rescheduled it, but in the mean time another Dr. had me on Prednisone for 2 months, which had all kinds of crazy side effects. Then Dr. XXX did tests, told me briefly what I had, (Erosive Oral Lichen Planus), DIDN'T tell me that there's no cure, (Yippee!), kept me on Prednisone for a 3rd month and added Mycophenolate, which has a whole new set of crazy side effects, (DO I REALLY WANT TO DO THIS???), I haven't been able to eat ANYTHING but vanilla ice cream for over 6 months, because it freezes my mouth so I don't feel the pain, and there's no nutrition in vanilla ice cream. They now have me drinking vanilla Ensure, which burns like fire, but I drink it anyway....I'm terrified of taking the Prednisone & Mycophenolate (couldn't possibly be a worse time to be suppressing a persons immune system -- I'm 70 years old and visit my 97 year old mother in a long term care facility once a week. I've had 2 Covid vaccs, but can't get the booster because of the immunosuppressive drugs...). I'm also scared to NOT take the drugs, because I've read that this disease often causes oral cancer, especially in those over 65, and quite often on the side of the tongue --- and the side of the tongue is where I have it the worst. My Dr. hasn't told me any of this stuff yet. She's a Dermatolagist, very young, and probably excited to have an exciting case like this to deal with -- I hope! I've only seen her twice, so far...another "do this, and I'll see you in a month". Do they realize that a month is THIRTY DAYS??? Anyway, the more I read about this whole thing, the more terrified I become. Do I take the drugs, let them suppress my immune system, let whatever is hiding inside of me or whatever I run into outside of me get ahold of me and finish me off........or do I NOT take the drugs, let the disease continue to destroy the inside of my mouth, possibly travel to the esophagus, nose, eyes, or maybe just cause cancer and get it over with sooner? No one to talk to. No one to help me figure this out. Stress makes it worse. WooHoo!!!