Erosive oral lichen planus

Posted by germany2 @germany2, Mar 20, 2017

Hello
I'm new to the group. I was diagnosed with erosive lichen planus 4 years ago and it has been a nightmare since. Mine has progressed from my mouth to my esophagus, nose and eyes. I've seen so many doctors @ Vanderbilt and St Thomas Hospital who have no idea how to treat my illness. I've. Even advised to go to the Mayo Clinic in Rochester but I'm really not sure what doctor or doctors have experience with treating this disease. Any help would be appreciated
Thanks

Interested in more discussions like this? Go to the Autoimmune Diseases Support Group.

Becky, Volunteer Mentor | @becsbuddy | Oct 27 9:53pm

In reply to @hummeraa "I need some help please If anyone can answer my questions. I have recently diagnosed with..." + (show)

@hummeraa Welcome to Mayo Clinic Connect! I’m going to ask some members to stop in and give you their help. @mayan0225 @rashida @jamruth. @zinnia225 @diana70 @moylandavis .
While we wait, check with your pharmacy to see if any prescriptions were sent.
You can also check this website: rarediseases.info.nih.gov/oral lichen planus. There may be some information there to help

moylandavis | @moylandavis | Oct 28 6:18am

In reply to @hummeraa "I need some help please If anyone can answer my questions. I have recently diagnosed with..." + (show)

@hummeraa there is a lot of great information posted here, so make sure to read through…
For me, I switched toothpaste to “Happy Tooth” which I buy on Amazon. Also stay away from spicy food and high acid food…soda also makes condition worse…my gum bleeding has stopped and no more mouth sores…for the last 9 mouths or so…

microgirl | @microgirl | Oct 28 11:05am

Welcome-who were you diagnosed by? Did they do a biopsy?
The physician/dentist didn’t recommend or prescribe treatment?
I use 0.05% Clobetasol gel on my gums 3x per week
I also make a solution 1 capsule (1mg) tacrolimus in 500ml water. The solution is refrigerated and I “swish “ a mouthful 3x per week for 1minute.
I have generally done very well with this; my dentist just recommended having my teeth cleaned every 3-4 months rather than 6 months

lewin | @lewin | Oct 28 8:45pm

In reply to @mayan0225 "Hi friends I have a long OLP story to tell you perhaps it will help someone...." + (show)

@mayan0225

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

Jump to this post

@mayan0225 Were you diagnosed with cancer?

shelby29 | @shelby29 | Oct 28 8:48pm

Mine has transfered to my ower lip and it is ungodly painful.
Actually wakes me up at nite with throbing pain.
Just sucks. Can't belive we can cure cancer but can't treat OLP!

jeraberkana | @jeraberkana | Oct 29 12:08pm

I'm so sorry your lichen planus has traveled @germany2 . So far, I only have it on my gums and since it's the mouth I've worked with dentists, periodontists, and an oral surgeon. I think if mine does spread, I would immediately go to the Mayo Clinic or another world renowned clinic if that one is closer to you. They are on the cutting edge of medicine and may have an idea that others would not. Please let us know how things go with you. This is a very supportive group.

jeraberkana | @jeraberkana | Oct 29 12:51pm

chrisanon (@chrisanon)
I am replying to your query about a surgeon in Chicago. I don't have a surgeon but I did get my OLP diagnosed at the University of IL Dental Clinic by Dr. M. Miloro who is an oral surgeon in the dental school. She may have contacts in the Chicago area for esophageal lichen planus. Wishing you well in Chicago, one of my favorite places.

chrisanon | @chrisanon | Oct 29 1:36pm

Thanks so much! I am waiting to be hooked up with my gastro at Univ of Chgo LP Clinic in Orland Park, but if that falls apart, will check into Dr. Miloro. Super appreciate it!

lindaadele | @lindaadele | Oct 29 3:34pm

The one thing I learned years ago from consumer report is to be very careful with what kind of toothpaste you use if you have gum situation’s, You do you want to use a toothpaste that is irritating to your sore gums! Try to use a toothpaste that does not have the ingredient sodium lauryl sulfate (SLS)in it! I learned about this in Consumer Reports.

sed05 | @sed05 | Oct 30 1:42pm

I have lichen plantus. Had my biopsy @ Mayo/Rochester, Mn. I have found that getting into dental Hygienist every 3 +1/2 months keeps it under control with using electric tooth brush/floss twice/ day. Hope this helps!

View More View Less

Please sign in or register to post a reply.