It's a tough one, @jp53. I had it for years before a lesion on my tongue turned cancerous.Don't be alarmed because it is quite rare. I had the more generalised, stripy lichen planus in my mouth which came and went and then it seemed to settle in one spot - left lateral tongue. I was told it would go way by itself. The only thing that gave me relief was steroid medication but you can't take that for too long. I saw an oral surgeon and a dermatologist who couldn't help me.
Since cancer I have had no more trouble which makes me think the isolated lesion may not have been lichen planus but cancer all along. I'm still confused about this. I have heard of people with lichen planus of the skin having light treatment with some success but LP on the mucosa - I'm not sure about the latest treatments.

Right, there is no reasonable treatment for this. It can be (is) quite miserable, especially when you consider that there is no hope of its going away. What was done to treat the cancer?

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

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.

What side effect to you have with esophageal LP. I have oral LP and Vaginal sclerosis. I have had issues with ears, nose and hair.
I have recently had problems swallowing.
When I am stressed and have an outbreak it is awful. 12 years of searching for right doctors. I think I have found right doctors and treatments.