Oral Lichen Planus-need specialist
Is there a doctor at Mayo-Rochester who specializes in autoimmune diseases? I have oral lichen planus and my mouth is on fire all the time. No doctor in my clinic can give me help.
Interested in more discussions like this? Go to the Autoimmune Diseases Support Group.
My OLP wasn’t caused by any autoimmune disorders.. they couldn’t figure out what was causing it. I’ve been checked several times for lupus, hepatitis, Sjögren’s syndrome, etc. I’m not diabetic.. they kept wanting to figure out what caused it. It was all whitening toothpastes for me.. different brands; if the tube says whitening.. it irritated it further. In almost 3 years my OLP never completely healed.. felt better, looked better, but always had sores inside my cheeks. .. I stopped with ALL whitening toothpaste brands and the sores have healed. For the last week, I’ve been eating things I couldn’t eat for pain before.. pizza, spaghetti , etc.. the many doctors didn’t ask about my OLP anymore; they just looked in my mouth , cheeks ( some didn’t look at all). If they couldn’t figure out what was causing it, they should’ve referred me to someone who possibly could. Thank God I read and try things myself or I’d probably NEVER have gotten rid of it. Like I said; my OLP wasn’t from an autoimmune issue.. it was solely caused by the whitening toothpastes. I hope this helps someone.
can you share the brand of Toothpaste that does not cause you OLP issues?
I use pronamel and Creat Gum Detoxify … just toothpastes with fluoride and no whitening agents in them is what I’m using from now on. I believe the OLP is gone and not coming back too. Hope this helps.
Crest^ Gum Detoxify
I learned about Dr. Bob's Unflavored Toothpaste in this forum, and highly recommend it. It's a clear gel with fluoride, no sls, nothing that irritates my OLP.
@kruggy Welcome to Mayo Clinic Connect! And thank you for re-posting a suggestion that helped you but that others might not have seen!
How long have you had OLP? Do you think your treatment is going well ?
Just after I posted about Dr. Bob's toothpaste, I found that it's unavailable now!
I've had OLP for four years, and thankfully it's mild and manageable with the right toothpaste and avoiding the irritating foods, but sometimes dexamethasone rinse is needed, or fluocinonide, or coconut oil to relieve symptoms.
Hi Kruggy. How specifically do you use the coconut oil? Is it liquefied, do you rinse or apply along the gum line? I have 100% pure Louana brand, non-hydrogenaed. I've only used it for cooking. Thanks.
I just take a half to a full teaspoon of it, melt it in my mouth and swish it around for a minute or two, then spit it out. It can be soothing when your OLP irritation is on the milder side.
I received my OLP diagnosis more than 20 years ago. The strange thing is, my father had severe OLP and had had it for years when I was diagnosed and my mother had/has lichen plants in her nails but there is no suggestion that this is a genetic disease.
That said, I found a direct correlation between acid reflux and outbreaks of OLP. About 15 years ago I started drinking a liquid Aloe supplement, 2 oz daily (for stomach issues). The reflux stopped and the OLP threading on the cheeks, sides of tongue, and inside of lips almost entirely cleared. I had/have some permanent scarring inside cheeks and if I do not take aloe consistently or if I’m under high levels of ongoing stress, the outbreaks do come back. When that happens I double or triple the aloe (4-6 oz daily) until the OLP ceases again. My father used the gel and his was so severe it dug permanent crevices into his tongue , making it horrible to try to eat. He used the gel regularly. I have used Pronamel toothpaste for a decade due to weakened enamel so I cannot speak to that but I did use coconut oil mixed with very small amounts of specific food grade essential oils for “pulling” for a brief period years ago. All I can say is it didn’t hurt or exacerbate my OLP.