Erosive oral lichen planus

The rheumatologist appointment isn't until March, but will let everyone know its outcome. If I know I'm going out to a meal, I swish with Magic Mouthwash and take an ibuprofen. It helps for awhile. I look perfectly normal(!), no one would know what a mess my mouth is.

Hi friends I have a long OLP story to tell you perhaps it will help someone. There's definitely ups and downs, so hang on. Was diagnosed with olp by biopsy in 2016 and referred from one provider to the next 3 times and when the 4th referal came up I said "forget it" having done a lot of research on my own and realizing there's no good treatment options, I decided I'll just live with it. It was definitely erosive by this time I couldn't even look at anything spicy, and I had to lol at someone's post that said "I can't eat square food." Laughing with tears in my eyes, as you know. Fast forward to 2024 I decided I should have it looked at again, and it had transformed into oral cancer. I went through a most difficult surgery with almost half my tongue removed and replaced with a skin graft from my wrist. I hope you all never have to go through this but it is remarkable what can be done. Not fun however for about 4 months.
Now I'm over 1 year out and all was looking good when I started chewing gum again (to help with mobility in my mouth) and Bam! I saw the telltale white lacy lesions spreading across the graft in the same area of my tongue where I had the OLP. Imagine my distress. I had JUST been for my 1 year checkup with the cancer surgeon and all looked good. I had a pending appointment in about another week to see the reconstructive surgeon. In the meantime 2 things came to mind: 1) I had been chewing a LOT of the same type of chewing gum prior to my initial symptoms of OLP. It was a very strong spearmint flavored sugarless gum, a popular brand. I was binging on it thinking it was tasty and fewer calories than eating sweets, and good for my mouth to boot. Well.
Then I read that 1 of the triggers can be string, cinnamon flavored toothpaste. Similar. So I'm pretty sure that was my trigger for the olp. So of course I quit chewing the gum, and I had to avoid any spicy or acid foods and wine because they were starting to feel sore in my mouth (the graft has no sensation at all but the floor of my mouth around it does.
In my desperation I remembered an article I had read years before about a large study in India treating erosive OLP with turmeric paste with good success. I should mention that I'm a retired nurse and family nurse practitioner so I know how to read medical articles. So I started doing turmeric smoothies for myself twice daily. Whatever smoothie ingredients you would find soothing, then just add 1.5 tsp turmeric and blend it really well. I would sip on it and hold it in my mouth in the area where the lesions are for a minute before swallowing each sip. I figured that way I'm getting it topically and also ingesting it. I would make up 1 batch of smoothie in the morning and drink half of it then and half in the evening.
By the time I went back to see the reconstructive surgeon he was "unimpresses" (a good thing! but he also sent me back to see the cancer surgeon again just to be sure, and he too was unimpressed. They think I imagined it, but I know what I saw and what I felt during that time. That's been about 3 months ago now, and I don't do the smoothie every day but I try to do it most days and there is no sign of OLP on my tongue.
Now, being a health care professional I am very skeptical about so-called miracle cures posted on the internet and particularly for such a difficult and intractable disease as this, people become very vulnerable to so-called cures. What I am saying is I don't think it could hurt to try something like this, but don't quit any other treatments that you are taking unless you and your providers decide for whatever reason that it's time to stop that treatment. Obviously particularly with steroids it can be dangerous to stop that suddenly.
I also want to say that my tongue graft was intact skin with just a light lacy lesion over it, so trying to treat ulcers could take a much longer time. Also I don't know how irritating turmeric would be on open oral lessons. Hence trying to find a smoothie base that would be soothing not irritating.
I just wanted to share this. I hope I don't get anyone's hopes up and then it not be helpful but I was looking in the mirror this evening and feeling so blessed that there is no sign of OLP so I wanted to share it.
I probably won't monitor this chat much, I just wanted to drop in and say this so God bless you all and I hope SOMETHING brings your OLP journey to a healthy and happy conclusion.
Mary Y

Yes I have been diagnosed with the same. I was experiencing everything you've listed and much more. The only help is a med called hydroxychloricine or plaquenil it has completely reversed everything. This med is immunotherapy drug. And it also fights off certain cancers associated with olp.

My dermatologist put me on immunotherapy drugs it's a demard a disease modifying drug hydroxychloricine generic is plaquenil it has completely changed my life there is a 10-year span of which you can take it because it causes damage to your eyes but my oral like in plainness was causing damage to my eyes anyways and the damage has improved. I can now be out in the open air eat and drink whatever I like I'm making my own tears again and live a normal life however the doctor say you have 10 years to take this medicine before it starts affecting your vision meaning blindness can occur but so far it's only helped my vision I've been taking this medicine for 4 years now. I have some eye drops and ear drops to help my ears when I'm having a flare up apple cider vinegar baths and I put a lot of ACV in my water it helps my hair growth and emuaid is a life changer it has a numbing agent in it. Cranberry for frequent UTIs and my friend has made a cancer ointment that is out of this world and works for my ls better than any over-the-counter regimen I know this was a lot hope this helps you.

@jessicared Welcome to Mayo Clinic Connect ! Your posting is so positive even though OLP is such an awful disease to have. You’re a great addition to this discussion/support group?
One question, what is ACV?

OLP is driving me mad. I am constantly concerned I am going to get cancer because it is not clearing up. I am now on Eleuphrat cream (betamethasone dipropionate, mixed with canestan cream to apply to gums and oral mucosa, spit out after 2 mins. Is this an appropriate treatment. I have given up alcohol in case it is an irritant, but wonder if I should just have it to enjoy life a bit. I just keep wondering how did I get this. I think I am starting to get it on my soft palate and my throat now. Also have an ear than feels blocked which I am thinking must all be connected and thus my fear. Its also the cost associated with all of the treatments. I am at retiring age and wonder how on earth will I continue to see specialists in this field. GPs know nothing about it so you have to see specialists and if you cant pay your not seen. Any thoughts.

ACV = Apple Cider VInegar too acidic for me, unless super diluted- i used to use it.
Becky, I have OLP. Esophageal LP, LP on skin and vulvr lichen sclerosis (all confirmed by Mayo biopsies. Wish i knew the connection to LP and LS. Have you heard anything?
I also am seeking a unicorn- a Neurosurgeon who has experience with Esop LP- literally cannot find a one in the Chgo or Mayo area, which shocks me. I know it's a rare disease, but I am certain there are other patients with Esop LP (not quite same as ELP which is erosive LP/esoph LP affects swallowing. (I do howeer sometimes get the mouth sores but was never dx'd as tgat, Had lots of mouth ulcers as child. Was treated with baking soda paste.
If you happen to know of any surgeons (anybody know?) I would be foreer grateful.

Best regards,
Chris

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I've had OLP for a few years now. At this point I'm not experiencing a big flare up, but there are remaining sores/changes on the inside of my cheek and a spot on my tongue and lower lip. Still have pain and trouble eating "square" food and alcohol/spicy stuff. I am concerned with possible cancer at this point. Anyway, I finally got an appointment with an oral surgeon tomorrow and am reaching out to you in this forum to ask what kinds of questions should I ask the Dr? My mouth looks pretty clear except these particular spots. Any advice would be helpful. Thank you. Metta