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Hi Knowjo,
I also have ELP, OLP and LP. I have strictures in my esophagus also. Things get stuck in my esophagus especially my pills in the morning. The OLP is tough to deal with. My mouth and tongue is always swollen and sore with lesions. The skin on my lower legs has lesions all over.
There isn't a specialist or doctor around here that has ever had a patient with ELP. The Gastroenterologists don't know of a physician in Seattle that has treated a patient with ELP. ( I live 90 minutes from Seattle.)
The only medications I have been prescribed is dexamethasone oral rince and a lidocaine oral rinse. I'm very frustrated!
Replies to "Hi Knowjo, I also have ELP, OLP and LP. I have strictures in my esophagus also...."
I’m in Seattle also and have ELP and am running into the same issues as you have. Did you find anyone around here to treat you.
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Oh dear sounds very frustrating
Have you had any Endoscopies with biopsies, and dilations?
I bet you have a Candida infection in your mouth due to the steroid mouthwash, so please try to get a prescription for luquid antinfungal fluconazole 10 day course. Be sure to swish it around in your mouth and pull it through your teeth,and gargle before you swallow. Candida in the mouth and esophagus can cause as much problems as Lichen Planus itself
If the Lichen Planus is severe, you may want to try to get on Immuno suppressants.
Apparently, CellCept is the one most prescribed for Lichen Planus in the esophagus.
As for skin conditions, I have found for me a cream designed for psoriasis ( which I have also ) actually works well for my Lichen Planus on the skin -better than any steroid cream I’ve been prescribed:
‘MG 217 psoriasis’ The Main Active ingredient is salicylic acid, but there are other ingredients that I think are effective as well.
Here’s hoping u can find a good Gastro that knows Lichen Planus (A lot of Gastro‘s think it’s acid reflux ) and a good dermatologist that knows about autoimmune issues!
It’s a crazy journey… i’m always being told how rare this condition is, but I bet in years to come someone will put all of this together and then Hopefully there will be a lichen planus specialist that can help us on all fronts!