Erosive oral lichen planus

I always check into this group to see what's new and find that most of the time I find very helpful information. What I would like to find out what your OLP looks like. Mine never goes away. I pull back my lips, and those glaring red gums are looking back at me, nothing like they used to be. My cheeks have many white lesions and must be slightly swelled as I have frequently bitten them in my sleep. Also what areas on the gums that almost look like bone coming through. I am wondering if an others mouth is similar?

@bestoflife Hi, I was told you will not lose your teeth because that is a bone structure and this effects the soft tissue. I have no idea how it forms or how it got triggered for me. My gums were pretty erosive looking but they did not hurt too bad mostly uncomfortable there was a lot of redness and the white strie and twice I had a little bleeding. I would suggest going to a dermatologist that is the only doctor I have found relief with. My oral surgeon biopsied it but then basically said I am on my own he doesnt treat it. For me the worse part is never knowing what it was or how to make it stop or what food to eat my brain just spiraled. Now that I have found some treatment and it has calmed down it is becoming easier to deal with.

@zinnia55 I'm sorry your oral surgeon had no treatment and was, seemingly, unwilling to learn and figure out solutions with you. Did the dermatologist give you something to put on your gums or was it a pill that could help the gums? I have only seen an oral surgeon and a periodontist and both gave me topical treatments for the gums (steroids, magic mouthwash, dental paste). Re. losing teeth, I have lost teeth because, in my opinion, when the gums aren't healthy, food gets stuck, recession occurs, and teeth can loosen. As the disease progresses, the gums get more tender so it's hard to keep everything as clean as I'm used to doing. I do, however, believe in keeping teeth for as long as possible and I use bone tapping to try to strengthen all bones.

@bestoflife I'm right there with you with my OLP never going away. It seems you have had some improvement since you are saying your gums aren't like they used to be. Are you using something that you believe has worked? I'm always looking because I think there's an answer out there. I just have to find it! My oral surgeon prescribed clobetasol proportionate which is a steroid. I've used it when I have lesions. I asked for something less aggressive because steroids thin the tissue, which seems so counterintuitive when the disease process does the same thing. I now have a steroid that is less intense. I'm working with a periodontist. While I, by nature, resist using medications, I'm following his advice and using the steroid for 14 days consistently to see if I notice a difference....day 1 and counting..

@suecutuli Hi Suecutuli. I'm wondering if you are continuing to use the Spilantes. What have you notices as time has gone on? Would you continue to recommend it? Thanks for any insights you have. I truly believe there are solutions out there and appreciate this group so we can share our treatments that work.

@jeraberkana Hi yes the dermatologist gave me dexamethasone liquid as a swish and spit followed by tacrolimus ointment applied inside the mouth. I did this for about a month and it really started to lessen the disease in my mouth but the steroid side effects are not great either. So now I have been on low dose naltrexone 3mg per day for 21 days and it has helped soo much! I finally feel like there is hope, I also use the tacrolimus once a day and I bought a therpautic red light mouth piece of Amazon and I am up to 11 minutes a day. This is the best my mouth has been since May and I am hopeful in time it all goes away or I can stay on naltrexone long term. I have been on the LDN for 3 week and I am starting to have digestive issues so next week I am seeing if I can go to a sublingual form of the medication. I have also implemented a strict teeth brushing, flossing and rinse 3 x a day and a quick water swish after meals to keep it as clean as possible and I now go to the dentist evry 3 months. That has been helpful as well. So sorry abouth your tooth loss. Have you thought of seeing a dermatologist? Or look into low dose naltrexone see what your doctors say.

Mayo has an oral Medicine group within Dermatology

@suecutuli yup. Mint hurts and all adult TPaste is mint! I use bubblegum, or strawberry.

@zinnia55 did you start LDN at 3mg?? That's way too high a dose, too fast which no doubt is the reason you are having issues. You have to start with a very low dose! I've done a deep dive in LDN, I've been on it for 6+ years and I studied it for a year before I went on it. I wish doctors who prescribed it knew more! Here's the regiment.

0.5 mg at night, x3 or 4 weeks.
1mg at night x2 weeks
1.5 mg at night x2 weeks.
2mg at night x2 weeks.
Then can go to 2.5 or 3 depending on your tolerance.

If you are having insomnia or lucid dreaming, go back down on your dose for a while.

You said you hoped you could be on it long term. LDN should only be used long term as it can take a long time to help. You can not take opioids when on LDN! (It renders opioids useless and will not help pain.) If someone can't go off of opioids, you can't take LDN.

Many times people feel like it's not helping after they've been on for 6 months or a year and you don't realize till you go off of it that it actually was helping. I don't feel it helps my OLP at all as I always have lesions in my mouth but I guess it could be worse?

If you are taking LDN in the morning with nausea, it's always best to take it at night anyway. The lowest amount you take and it helps, the better - usually 2.5 to 3.5 for a while before going up higher if you must. It works by having a very short halflife.

Side effects mostly only happen if the dosage is too high, too fast. Don't give up.

I hate that people don't have a good experience just because doctors don't understand how it works and how to prescribe it.

And its not a magic cure. Its an anti inflammatory. But it can be used for many conditions including parkinsons, some cancers etc. Its only fairly newly recognized as helpful with many disorders but LDN is always an off label use of Naltrexone 50 mg which is used for drug addiction. There are also very specific ways it needs to be prepared by a pharmacy who knows the medication powder and what country it is coming from. If someone is finding no value, it may be a bad manfacturer in India, China, Israel.

It is mostly used for chronic pain but its anti-inflammatory properties are helping autoimmune issues sometimes, like OLP.

Sounds miserable. 3 weeks ago I had a biopsy of an ulcer on my tongue that my oral medicine dr. wanted to check.
It came back benign but with atypical cells that will need to be followed up on religiously.

Ulcerative/erosive Oral Lichen Planus is considered a pre-malignant condition. I went years without being followed for this by an oral medicine dr. Big mistake! Please don't do this anyone. It was a scary 2 weeks waiting to find out if I had mouth cancer.

And the biopsy results still give cause for concern and close watching. I will now be seeing her, an oral medicine person who specializes in this. My dentist never raised concerns which created a false sense of security. The first biopsy I had years ago was by an ENT, covered by insurance. The dentist at the time recommended an oral surgeon but they are NOT covered by insurance (esp medicare) if it goes under a dental procedure it will be refused.