Erosive oral lichen planus

Hi Lima, I am so sorry to hear what you are going through. I was diagnosed with lichen planus in my cheek maybe 15 years ago. Five years ago, it turned into squamous cell carcinoma. I went through surgery and radiation and have been cancer and Lichen planus free for five years. I do not know what to tell you. I will have to go on line and look into your condition to better understand it. All I can tell you, is that juicing has made me healthier. Have you checked your vitamin D levels? Just wondering I will get back to you later. Loli

Hi Lima. I looked it up. I do not know if you would be willing to try essential oils on your scalp and face. This I use instead of expensive creams for my face anyway. Since my cancer, I make an effort to keep as natural as possible. I buy organic as much as I can, I drink water from glass, never plastic, and I do not use anything on my skin, if I cannot eat it. So, "first press organic coconut oil", in which, depending on the amount of oil, I mix sacred frankincense essential oil from Young Living. It is supposed to help with inflammation. I would try it in a small area first. This might sound silly, but I never took any medication for Lichen Planus, and my heart goes out to you, so this is all I can recommend. Hopefully, some of my friends from this blog, can help.
Loli

So sorry you are going through this @lima. I had oral lichen planus for many years and never found the trigger or a cure until it settled on a spot on my tongue causing a cancer. Once the cancer was removed, no more lichen planus. But your variety of this condition sounds awful. Can you go back to the effective dose of cyclosporine? I don't have any advice except to keep trying to find a medical team who can offer some better solutions. I remember when I was a chronic migraine sufferer two things helped. One was seeing a neurologist who was a migraine sufferer himself. Another was emailing the editor of a migraine newsletter who had good advice on how to keep the attacks under control using minimal medication. I do hope you find some good tips here on Mayo Connect.

@loli. Thank you for your suggestion I will definitely try the oils. I do also avoid all chemicals for my face and scalp as well. Thank you for your kindness and good thoughts

@alpaca , Thank you .I'm out are looking for the answer. I believe somebody will have to answer for me. thank you

@loli, My Vitamin D levels are fine. I have been juicing probably from age 40 and I am 51 now. I hope my scalp lesions don't turn into cancer but that only means I have to keep eye on them

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.

Chiropractor services interestingly seemed to give me improvements in mouth conditions even though I was going for something else.
Stevia- forgot to mention I had allergy to this that manifested in form severe hot flash so the use of stevia is not without risk. Thanks

Hello @fancyrph, welcome to Connect. Thank you for sharing your post. You've certainly tried a lot of different treatments. Hopefully others may be able to offer some suggestions. I did find a couple of articles that may provide more information for you.

Oral lichen planus: Challenge and management
-- https://onlinelibrary.wiley.com/doi/full/10.1111/odi.12712

The effects of photodynamic and low-level laser therapy for treatment of oral lichen planus—A systematic review and meta-analysis
-- https://www.sciencedirect.com/science/article/abs/pii/S1572100018301613

John

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