Systemic Lichen Planus - rare, aggressive mucosal variant of LP

Posted by chasity50 @chasity50, Nov 17, 2025

Hi! I was recently diagnosed with systemic LP. I would love to connect w/ others who are also trying to understand & manage a systemic case of LP. I was perfectly healthy until I had 2 root canals July 2024 & within a few days of the procedure I experience my first oral flare, but didn’t know until a year later that it was OLP. Since July 2025, other flares have rapidly occurred & I am now being treated for LP in my scalp, inflammation in my eye, left ear, oral, esophagus, skin, nails, palm of hands, bottom of my feet & vaginally. My energy level has dropped tremendously & I’ve had to adjust my work hours. I started taking methotrexate yesterday. I would love to know how others w/ this disease are coping.

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kristine31 | @kristine31 | Nov 17, 2025

I have LP and LS as well as 3 other skin conditions for mine I take Methotrexate for about 7 months now plus folic acid and 3 creams it's a tough skin condition that leaves a person feeling miserable in August I went to ER as I didn't know what else to do. My Dermatologist is fairly new I'm her first case of LS and LP. I have eczema rosacea and morphea as well. So far knock on wood I am not doing to bad with any of them as soon as it itches I use triamcinolone for LP in mouth and body and Momestasone 2 x's a day for LS plus clobetasol only 2x's a week. I have had 3 biopsies as well as the misdiagnosis. Hugs to you and all who suffer from this.

chasity50 | @chasity50 | Nov 18, 2025

Thank you for sharing! Did you start showing LP & LS symptoms close to the same time? How long has that been? I hope you are getting relief w/ your medications. I’m going to ask my dermatologist about triamcinolone b/c the clobetasol gel seems to be really harsh for my system.

kristine31 | @kristine31 | Nov 18, 2025

I was misdiagnosis in 2012 so it's been a long ride. Yes clobetasol is to strong for me to use except twice a week and I won't use it on open areas it burns like crazzzzy if I do. Momestasone is a good secondary option for steroid cream. But they said it was yeast infection and bacterial vaginosis and the last in 2022 they said Herpes!!! I was like no way in hell could that be possible so I went for a third opinion my dermatologist found the white patch on my back and before the results says she suspected LP.

chasity50 | @chasity50 | Nov 19, 2025

I am so sorry you had to go through 10+ years of misdiagnosis before getting the right diagnosis/help. I saw 15 specialists over a 13 month period before receiving a diagnosis & treatment plan. I’ll definitely check into the option of Momestasone cream!