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 I too have very red gums, they look spongy to me on the top set with red and white, redder and swollen on the bottom. Thank god when I smile I don't see my gums. They are always tender and if they get nicked they will bleed. That was how I realized something was wrong, originally I bled a lot. Then the white striations came, and then the sores in the bottom mucous or on the outside gum of the tooth. White puss looking things. Brushing teeth OMG that was awful.
Since the Dentist didn't know, they said go to your Doctor, The doctor did blood work and sent me to the ENT. That Dr did a buccal swab and gave me the Steroid Dental Paste.
After two weeks of that the sores healed, less white striations, and it's calmed down a lot. I found Toms Toothpaste with coconut oil. At least not as irritating to brush now. I avoid citrus , spicey foods, abrasive foods. No chips or crunchy. I also drink less alcohol, but one day at Christmas I had a few glasses of wine and that wasn't good. It flared again. I too wonder if the inside tissue is thicker/swollen... feels like it. Hoping it stays at bay with no open sores, like it is now but who knows.. @zinnia55 it's sad that the doctor's don't care enough to find a solution. I feel that is what's lacking in our medical system with so many specialist. Hard to find that one that will dig until they've figured it out. If I have another flare up like I lived will most of the summer I will ask about this mouthwash. Both doctors put Lichen Planus in their reports but neither has actually said those words to me personally. I'll see my Dr in February and I am going armed with information to talk about. I will consider a biopsy at some point too. All best to you all.

@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.

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

@bebold Hi! Thank you for the information. As of today I am on 1.5 mg(made at a local compund pharmacy) and I take in the am with food which seems to help with the side effects (ridiculous constipation). My Dr. was out of town for the holidays so I am waiting to hear back if he wants me to go down to 1 mg. I did like taking it at night but its just too hard on my stomach. I am sticking with it as long ass I can work out the kinks because I can see my mouuth is healing not just calmed down but actually healing and I really want to put this into remission. I wanted to try the troche but it turns out they make it with citric acid and thats a trigger for me. Do you have oral lichen planus? Are you in remission and still on LDN? Thanks you for the feed back!

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

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

@bebold Biotene toothpaste at night.

@bebold no toothpaste that contains SLS ! Amazon Cleure Toothpaste.