Esophageal Lichen Planus

I just got the okay from my doctors to have my ELP treated with twice-yearly Rituxan infusions. My first treatment is mid-October. Is anyone else on this site being treated with Rituxan? If so, can you share your experiences?

Hello ! Also have ELP and was wondering how this twice yearly medication has been working for you. Any other info would be great. Thank you

I have been diagnosed with ELP No oral or skin problems. Any info would be greatly appreciated of anything that has helped prevent the strictures or foods to avoid or medications that have helped. Anyone see a rheumatologist? Thank you so much

Actually, it was a rheumatologist that authorized my use of Rituxan - it is apparently used for RA most often. I will be the first patient to try it to ELP in my medical plan as far as I know. I am hoping it extends the time between endoscopies with dilation - currently, I have to have them done every 4 months. I have my first infusion on Monday 14 Oct and will be happy to post my results.

Haven’t gone yet but plan in 2024 to go to Mayo Rochester Dr Alexander to be treated w dilations to get to 14 mm then learn self dilation (hopefully!)
They want me to have my derm prescribe immuno supp first (cellcept his unofficial rec although i am reading others have found success w methotrexate )

Currently being seen by dr Katzka, esophageal spec at Columbia NYC
He prescribed the budesonide mixed w honey swished and swallowed. (W fluconazole intermittently)

All meds liquid form
Haven’t been able to swallow pills for some time
-Chronically 7-8 mlm :/

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!

Hi! I'm sorry you're struggling to eat! 50lbs. is a lot! Is it the pain in your mouth keeping you from eating? My mouth is raw with a few lesions that won't go away. I'm down 35lbs. I also have not accepted taking oral Dexamethasone. I was diagnosed 5 most. ago although I was having symptoms in my esophagus thinking it was gastric reflux. Which medication are you considering? I feel like my general doctor is just throwing steroids at me! She's never seen this disease before and isn't familiar with treatment! I would love to talk to you. At times I feel so alone with it. My husband tries so hard to help. He worries about me and is concerned about my weight loss. I'm 63 yrs. old and live in WA. state. I'm also interested in hearing about the the treatment you receive. ❤️