Erosive oral lichen planus

I have some information I would like to share.
My husband came down with lichen planus many years ago.He was treated at Tufts dental clinic.in Boston.They treated with a cream he had to put on a cotton ball and place it on the ulcer.
He did it for maybe 10 days or more.
It has been years that hes been free of lichen planus. I don't remember the name as it has been maybe 10 yrs or more.
There is a cream treatment for lichen planus.Once he used the cream ,he has been free of it.
Believe me there is hope for you.
It's just a matter of getting that cream.
I'm going to try and find the name for you.
Remember stress makes the condition much worse.
My husbands lichen planus was brought on by stress.
Please consult a medical school of dentistry.
They saved my husband from the awful feeling in your mouth.God bless

I have been diagnosed with severe erosive oral lichens planus by biopsy. Had it for 4 years now. It was so bad a few years ago that I lost 30 lbs because eating was very painful and difficult. I could not even touch my face on the outside with causing pain. Going on the assumption this is an autoimmune disorder, I have tried many things. I am managing now, so will share some things with the group. This is not an advertisement. I am listing products I've used that helped me in my own personal experience and will share some of my tips. Since digestion starts in the mouth, eating healthy to improve gut and function could help (especially for leaky gut condition which I have).

I stopped all NSAID use; I was taking Mobic(r) or meloxicam which is a very high powered NSAID that probably caused leaky gut condition. I think the NSAID is what started it all. Also was applying NSAID topically as gel form "Pennsaid".
Got tested for food allergies - see below
Get teeth cleaning every 3 months
Swish & spit with coconut oil before eating and all the time
Brushed teeth with coconut oil
Use water flosser on lowest setting
Stopped using big name brand toothpastes. Tried these: Squiggle-thumbs up, Peelu-doesn't burn but is a bit gritty, no flavor, charcoal DIY - AVOID ANYTHING CINNAMON AND MINT
Used COCONUT oil for oil pulling, and swished some in mouth before eating which can make eating tolerable
Glutamed by NuMecica- medical food (not RX) - for cell regeneration support, I add some licorice drops (non-alcoholic) since licorice is supposed to act like steroids. Still use this for flare-ups:
"Healthy Teeth and Gum Mouthwash, Super Effective" product from Dr. Arenander's product line. This does have peppermint oil but not enough to bother me.
Gelclair Rx of hyaluronic acid
Lidocaine topical, viscous - RX
Vitamin D - I was deficient so replaced by RX for 2 months and level is normal now
Positive for gluten intolerance by saliva test.
Food allergies - sent in samples of hair and a buccal swab. I'm not quite sure if allergies were tested on hair samples (which would be less accurate I think) or the DNA swab but were listed for MANY:
->chicken meat, beef, veal, black tea, cheddar cheese, cinnamon, components of egg and dairy, tomatoes, strawberries, gluten, cacao (chocolate), walnuts... THEREFORE, I have tried to cut out many of these items just in case. I did a 3 day cleanse consisting of smoothies & gluten free / vegan soups, everything dairy & gluten free and I had significant improvement. I now have 1 or 2 of these usually daily. Interestingly, a drink with lemon juice, cayenne pepper, and pomegranate seemed to do good. I tried this of course after the improvement because I would have never considered ingesting lemon or cayenne pepper while flaring-up.

Stress causes flare-ups. I use melatonin for calming.
The oral surgeon prescribed Lidex gel, which is not meant for application on mucous membranes, so it stings. I only use with absolute severe flare-up.
I have taken Medrol Dosepak (steroids) before. First time it seems to help but not after that. I was put on low-dose prednisone (steroid) for a year but that didn't help.
Have not tried any RX immuno-modulators like Imuran; have not tried Dapsone.
I think my nose is mildly affected. I think my eyes are affected too as I am getting stents put in tear ducts since they are blocked from tear drainage by inflammation.
Suffering is horrendous!
Will end here for now.

Hi new to the group. Diagnosed with erosive lichen planus in June 2018 after dealing with it for nealy 10 years. No dentist or doctor could figure out what this was. In June I found a new dentist, she diagnosed it, gave me a ton of info, suggested as much organic food as possible, little to no sugar, and check my vitamins. She gave me a steroid script for the lesions and an incredible mouth rinse containing lidocaine for the rest of the mouth pain. I found a company that sells a vitamin b mixture that has healed my mouth by 85% since June. Based on the previous comments, I need to check my vitamin d levels as well.

Hi new to the group. Diagnosed with erosive lichen planus in June 2018 after dealing with it for nealy 10 years. No dentist or doctor could figure out what this was. In June I found a new dentist, she diagnosed it, gave me a ton of info, suggested as much organic food as possible, little to no sugar, and check my vitamins. She gave me a steroid script for the lesions and an incredible mouth rinse containing lidocaine for the rest of the mouth pain. I found a company that sells a vitamin b mixture that has healed my mouth by 85% since June. Based on the previous comments, I need to check my vitamin d levels as well.

@dreamer60 This is an interesting story. Treatment of LP is 99% the steroid, rather than all the other things you mention. The problem with steroids is that they can cause serious side effects, some down the road. LP can also progress to burning mouth syndrome (BMS), which is also something that the medical profession seems to know nothing about and declines to bother with. Top specialists in oral pathology in NYC tell me there is nothing you can do. Both these conditions are in fact wide spread and doctors just seem to ignore them.

Hi new to the group. Diagnosed with erosive lichen planus in June 2018 after dealing with it for nealy 10 years. No dentist or doctor could figure out what this was. In June I found a new dentist, she diagnosed it, gave me a ton of info, suggested as much organic food as possible, little to no sugar, and check my vitamins. She gave me a steroid script for the lesions and an incredible mouth rinse containing lidocaine for the rest of the mouth pain. I found a company that sells a vitamin b mixture that has healed my mouth by 85% since June. Based on the previous comments, I need to check my vitamin d levels as well.

@dreamer60 This is an interesting story. Treatment of LP is 99% the steroid, rather than all the other things you mention. The problem with steroids is that they can cause serious side effects, some down the road. LP can also progress to burning mouth syndrome (BMS), which is also something that the medical profession seems to know nothing about and declines to bother with. Top specialists in oral pathology in NYC tell me there is nothing you can do. Both these conditions are in fact wide spread and doctors just seem to ignore them.

Yeah I was concerned about the steroid cream at first. But, I only used it on the visible sores. They have diminished enough to where I do not need the cream on a regular basis. There is a lot of truth to not having sugar. My mouth had healed up so much that I treated myself with all the things I haven't been able to eat for a long time. Which included lots of "naughty" sweets! I LOVE sugary foods. Well, I have been paying the price for that. I have had a flare up. I went back on my mouth rinse and am starting to feel better. Won't do that again!