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lovebug61 (@lovebug61)

Oral lichen Planus

Autoimmune Diseases | Last Active: Sep 10 7:15am | Replies (71)

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@microgirl

Hello, everyone,
I am new to Lichen planus. About a year or so ago, my dentist commented on my gums that they were so red that this must be lichen planus, but he thought it weird that only areas of my gums were "fire engine" red! He said to watch it for a few weeks and call back if still red-I called back and I am not certain the message was relayed to him. I was not in discomfort so I let it go-had never heard of lichen planus, so on with life!
My next dentist appointment, he was alarmed that my gums looked so inflamed and gums recessed. I was sent to a periodontist who cleaned the roots of all my teeth and I am set up to have my teeth cleaned every 3 months alternating between the dentist and periodontist. He did a biopsy which confirmed erosive lichen planus and referred me to a specialist. Now I am alarmed-they were all so empathetic at the periodontist encouraging me that the gum tissue had improved after the root cleaning and I was feeling more positive!
My appointment with the specialist left me numb! He's a dermatologist and dentist. He looked at my mouth and said that it "was a mess"!
"We'll have to treat this aggressively"! So began clobetasol and minocycline daily and I ended up with oral thrush!!! They backed off the clobetasol to every other day. At three months, he was pleased with the results and removed the minocycline and added an "anti-rejection" medicine rinse. He checked and said I also have it vaginally! I am using another cream there.
My tongue often feels like it's been scraped. My husband and I had been going through a rough patch, but had just begun to iron things out and wanted to return to intimacy but the pain is incredible!
I am looking for advice, empathy, a place to share and find answers. I am frightened as this increases the chance of squamous cell carcinoma and I have had two spots removed elsewhere prior to the LP.
Thank you for any help
microgirl

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Replies to "Hello, everyone, I am new to Lichen planus. About a year or so ago, my dentist..."

Hello @microgirl, Welcome to Mayo Clinic Connect. I read a post earlier in this discussion where @orangealert mentioned that mouthwashes and toothpaste containing sodium lauryl sulfate (SLS) can often make the symptoms worse. I don't have oral lichen planus but used to have a lot of canker sores frequently and switched to a toothpaste that does not contains SLS and it has helped me. @artist01 @rashida and other member may also have suggestions.

You mentioned the appointment with the specialist not going very well. Have you thought about a second opinion at a major teaching hospital or health facility like Mayo Clinic?

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