Erosive oral lichen planus

I had a partial glossectomy and eventually radiation. The nature of the squamous cell carcinoma was that further primaries could arise and they have. But I'm okay - scarred, a bit disfigured, limited eating options but I have a reasonable quality of life.

I went to Rochester over 30 years ago to a dermatologist and had a biopsy of my tongue. The diagnosis was Lichun Planus. I had to have blood work done and then was put on a pill called Dapsone. I was told it was used for Leprosy. Had to have frequent blood counts. Don’t remember how long I took it. Several weeks I think. I have been in remission now for many years. There is another rare condition called Bechets disease that can cause vaginal and oral ulcers. Actually as a child I remember being taken to doctor and having them burned out with silver nitrate sticks. As an adult had a series of 3 smallpox vacinne given as a shot. It worked for a year and then would go back for another shot. It worked great for 4 years until they said the FAA banned it and they couldn’t get the vaccine anymore. That was when I was sent to Rochester. I told the Dr. he had to do something. That should be a good place to go. A Dermatologist for a biopsy. Hope you get some relief. Elinor

Jp53. Read my post above from wisgrama. Got an eventual cure from Dermatologist at Mayo Rochester

That is amazing. When I had lichen planus I researched treatments like that (not sure about the actual name of the meds I found) but no one was brave enough to try them with me. I am so glad there is a treatment for oral lichen planus.

I have Oral Lichen Planus which is the immune system attacking tissue under the tongue. The Lichen Planus spread when I was under stress in the
last 4 weeks and has anyone heard of a cure for this condition. I had this under my tongue on the right side in 2016 and it turned into cancer.
When we had a family emergency, my children nor I realized the stress would create lichen planus on the left side under tongue, It has become
to painful to talk or chew food. I was doing great until the stress hit, really getting better as unbelievable as it was to the doctor. ENT Surgeon.
HELP!!!!!! anyone. The type of lichen planus I have is not virus related.

Hi, @elizabethbryant -- your oral lichen planus sounds painful and challenging with difficulties chewing your food. I'm sorry to hear that stress from a family emergency has caused a problem that had gotten a lot better to flare again.

I've moved your post here, because I thought that other members with any type of oral lichen planus would be of help to you and may have thoughts on what could provide relief.

Has your ENT had any suggestions for you on how to manage the painful talking and chewing you are experiencing, @elizabethbryant?

My husband suffered many years with lichen planus.He received care from Tufts medical center in Boston ,Ma.
It's a dental school.
They put him on a cream called ,I'm pretty sure it was bethamethasone.You can google it
He put it on twice a day with a cotton ball.
He's been pain free.
If by chance,which is few and far between.
He just puts cream on ot,and within a day or so it's completely gone.You can be free of it.Good luck in your research.
Please let me know how it worked for you..

Hi, @sheetrock0131 -- I appreciate this useful tip for @elizabethbryant. Does this look like the cream you were talking about: https://mayocl.in/2v7bvMH?

Was your husband's oral lichen planus. My lichen planus is under the tongue area and on the tongue. I will google bethamethasone.
Any other info. Please send. The name of his physician. I traveled from Central Virginia to John Hopkins about a dozen times
and had part of my tongue removed. Now the lichen planus has started on the opposite side of mouth under the tongue.
Any information is greatly appreciated. UVA did not diagnosis soon enough and this stuff went into oral stage on cancer which
cost me part of my tongue, now I have scare tissue.....not good......and pain.....Thank you so very much for your input.

The most concern over the lichen planus is the right side under the tongue went into errosive lichen planus and then
stage one cancer and part of my tongue was removed. My ENT told me to go to natural remedies there is no cure.
Now the family emergency set the other under side of my tongue off with lichen planus. My ENT saw it and said
it will not go away. I have used steroids, which I believe have only thin the oral tissue in that area and caused bleeding
I must rid my body of acid to and stress to gain control over the situation. I was really doing great until the situation
hit my household. I understand Boston has some great doctors, but no one seems to know (medical) what to do
with this. Thank you anyone who can suggest something. I looked up Bethamethasone and it states no to use it inside
the mouth