Has anyone been diagnosed with Erosive Oral Lichen Planus?

Good morning
I think what you have is oral lichen Planus .
I have had it before they really had a name for it so 40 years plus.
With the health of many doctors at the Mayo Clinic I’ve been able to get things much better for me
Toothpaste children’s toothpaste the one that was recommended was Tom’s children’s strawberry flavor, fluoride free After about two weeks, my mouth started feeling better
Mouthwash, I don’t know
Dental floss, no flavor and no coloring
Dental procedure no amalgams. I had mine removed, and I had a lot of them that helped my mouth as well
Foods no foods that are high and acid or acidic. There are many great spices out there that you can use instead of lemon and lime in your foods.
I think you could add onions and garlic back into your life and a few years once you could get your mouth
They do have some medication that like a gel you put in the affected area that does help. I no longer am using it because things have improved that much.
Lichen Planus To me is that my Body don’t tolerate chemicals. And I have to be very careful what I put on my body and what I put in my body
Wish you the very best in figuring this out

Hi. Sorry to hear of your problem. I am diagnosed with for the last couple years. Truly have to watch what you eat as most things do affect it. Mine came as part of a diagnosis of Sjogrens. That adds another level of misery. I get open sores on inside and outside of lips. Also open sores on tongue and feels burning a lot. Lots of yeast infection. Wish I had some better answers. It is miserable. Good luck.

Hi Travelgirl,
I also have erosive OLP. I feel for you!!! I was diagnosed a few years ago. It began with white "yuck" all over my mouth, tongue and into the corners of my lips. I also had lesions in my mouth along with swelling and severe burning. The doctor's thought I had Oral Thrush which they treated me for and it wouldn't go away. It got worse. I too spent my career in dentistry. I was an oral surgical assistant for 20yrs. I initially worked in general dentistry for 8-10yrs. Like you, I had never had a patient with OLP.
I was referred to a Gastroenterologist and had an upper endoscopy done with biopsies in my esophagus. I was diagnosed with ELP (Esophageal Lichen Planus) which is incredibly rare and complicated. I was also diagnosed with OLP. Then I began getting lesions all over my legs. I was diagnosed with LP on my skin. I had all three flared up at one time!! Lucky me!! LoL Unbelievable!!! I was prescribed Methotrexate steroidal oral suspension, Lidocaine oral gel suspension and a steroidal cream for my skin. I wouldn't take oral steroids because of the side effects unless I felt I really felt I needed it. The oral Methotrexate helps after a few days of use. Although, it can only be used occasionally for ten days at a time. The lidocaine numbs my mouth for a while which is a relief. Don't use the oral lidocaine suave we use in dentistry . It stings really bad!!
The only over the counter medication that helps me is Tylenol, Advil and Aleve.
On the positive side my OLP does go in and out of remission a bit.
My mouth is always red, inflamed and stings. The lesions come and go. My diet is like yours. I have to be extremely careful with food and drinks. Otherwise they can cause my mouth to get worse. It's difficult to live with but I have adjusted and accepted it.

Are you doing intermittent fasting or Keto? This is my story. I also have Oral Lichen Planus. I have had breakouts in my mouth for over a year and a half. I have been doing intermittent fasting and keto for 8 years.
Theses breakouts in my mouth were devastating I couldn't eat and they hurt all the time and were mental consuming because I could not find answers. I actually didn't even want to live any more because I couldn't find an answer and it hurt and was such a problem.
I also have MCS (multiple chemical sensitivity) don't know if this is part of it.
The strange thing is this year I had a family reunion and I went and ate like normal people do, I did not intermittent fast or watch what I ate. I ate junk food and carbohydrates. Not being mindful because I was with family and just didn't want to have to monitor my eating.
My mouth cleared up. It has been over a month and I have not had a breakout.
I have no idea what was missing in my diet that my body needed but my mouth is now clear.
I cannot help anyone because I don't know why my mouth cleared up. BUT if you relate to this maybe it will help.

Good morning from Vancouver Island! What a bummer eh? Especially since you enjoy food so much. I have been diagnosed with Lupus....but I seem to have more symptoms of Sjogren's. OLP diagnosed 6 yrs. ago....and more recently oral melanotic macule.....I am 75 yrs.old. But these things don't bother me too much. Lucky I guess. I use this toothpaste which is really really nice. It's called 10% Nano-Hydroxyapatite. Had to buy on Amazon, not in Cad stores. I am also fastidious about cleaning my teeth. For years I have been using a mixture I make of 50% distilled water and 50% food grade peroxide. I spray it in my mouth swish around, leave on for a minute then spit out and brush as usual. perhaps this has helped to keep mouth issues at bay? Take care.

Truly life changing! Your description of how it started sound like mine. I was in such a state over it that the stress didn't help.
It's been a year and a half for me. I find now that I don't eat any spicy acidic foods and I only drink lite beers and an occasional drink. I go easy on the crunchy snacks too. I don't seem to have 'as many' open sores (erosive) in the last 5 months. Occasionally I'll have a slice of Pizza cause I miss it. Just a few weeks ago my gums started stinging again like in the beginning. Scared me... So I did the swish and spit, Dexamethasone a lot. Also, when I feel my cheeks getting swollen, (hence biting my cheek more) I'll do it a night or two in a row...sometimes I can go longer in between.
When I get a real sore or one of the white lesions that hurts, depending on where it is... I apply the steroid paste a couple times. Usually at night for both and let it sit overnight. My goal is always to use it as little as possible. Also after going through many many toothpaste I found the Cleure worked the best, not cheap but a must for me. I also use coconut oil to swish and spit before brushing. Watch your stress levels, Not helpful!
You will find the foods that work and or don't for you... everyone seems to be a bit different.
Never heard of it before along with anyone I know of. Then oddly... I met with an old friend just the other day and she told me she was just diagnosed with Lichen Sclerosus. We were both shocked!
Wish you all the best... this blog has been so helpful.

@travelgirl53 it took several years before my Oral Lichen Planus (OLP) was diagnosed, after going to several dentists, and finally getting a referral to an oral pathologist at Sunnybrook Hospital in Toronto. If you live in Toronto I suggest you get a referral to Dr. Klieb at Sunnybrook Hospital Dentistry Department (since you are a dentist you probably could contact him directly). He finally prescribed (after trying other treatments that didn’t work on me) Lyderm gel. It is only supposed to be used for seven days, but mine was so bad it took ten days to clear. Now I use the Lyderm gel only when I get a flare, which can be triggered by stress or if I have inadvertently eaten something mushroom-related. Mostly when I am under stress.

OLP is an autoimmune disorder. It cannot be cured, but it can be controlled with the right treatment.

I suspect the reason you can’t eat all the foods you mention is because your mouth is so sore. Once you get it cleared up with treatment you may be able to go back to normal eating. Having said that, there still may be some foods that could trigger an attack. In my case I discovered, by trial and error, it is mushrooms in any form. But that is the only item I cannot eat anymore.

@flimzyreed47
Hi, I have been on a keto diet for the past year or so. I also am doing an intermittent fasting diet. I am extremely careful about what I eat and drink My diet basically consists of protein and vegetables. I restrict my diet to eating chicken and seafood. I don't eat meat from mammals at all! I do have one or two liquid yogurt drinks a day. I also drink a protein powder with a mixed greens powder and fat free milk at least once a day. These don't have sugar in them. I very rarely eat sweets or anything with refined sugar.
This has made a big difference for me. The breakouts of OLP have greatly decreased. My OLP was very bad. I lost at least 3Olbs.

@sadea0208
I live alone so it can be lonely, I don't think of that often but it is part of my story. I am 79 years old. I also have and ostomy so I have to be very mindful of what I eat and how i chew and digest foods.
I did keto and intermittent fasting from 22018 and lost 60 lbs. in the first year. Was religious about what I ate and did great and had my cravings under control. then I started cheating at about 3 years just once in a while but that turned out that by five years I was back to eating too many carbs. Still doing great but having more carbs. Now I am fighting with my eating properly again.
But my oral lichen started about two years ago and I went to dentists oral surgeons, and even an ENT nobody could give me a diagnosis but oral lichen.
I felt like giving up. It has been a surprise that my eating such a clean diet caused me those kinds of problems. I had to start adding fruit into my diet, didn't help.
But when I went to y family reunion and just ate normally everything no restrictions. I did stay eating a lot of meat and salads (and I do eat other meats).
That my mouth healed up. sense I am back home again I am eating of course my keto and intermittent fasting again.
I have not had another break out but do think about it and hope that my problems are behind me. I was a surprise to me that this happened because no one else that I talked to that did keto and IF had mentioned having these troubles. I stay away from sugar and white flour, and all ultra processed foods like it is the plague, Because I know it is unhealthy. I also don't drink any alcohol or sodas I eat as 100% naturally as I can.
I have also over the last two years put back on 20 lbs. of the 60 I lost, now it is good that I kept most of it off but I hate this 20 that came back and I am fighting it, it wont budge.

Members may also be interested in these related discussions:

- Erosive oral lichen planus: https://connect.mayoclinic.org/discussion/erosive-oral-lichen-planus/
-Oral lichen Planus: What home remedies or medications help you? https://connect.mayoclinic.org/discussion/oral-lichen-planus-3/