I finally got a diagnosis of Esophageal Lichen Planus in August 2023. I had already had 2 EGDs with biopsies after losing nearly 40 lbs due to swallowing difficulties. The local gastro group could only identify what I DIDN’T have. I was then diagnosed with vaginal lichen planus (had seen 5 previous gynecologists with no diagnosis over 3 years) after being sent to Gyno-Oncologist after abdomen CT scan showed suspicious tissues. The next month my dentist identified lichen planus at my routine cleaning.
I then began researching ELP and was pretty sure this had attacked my esophagus. I then found a doctor out of state who agreed with my suspicions, did another EGD with biopsies and confirmed ELP.
He referred to MUSC Medical University of South Carolina. This is a teaching/research hospital. I saw Gastro Group and Dermatology. I began systemic medication. Dermatologist referred to as “Big Guns. … Cyclosporine, 100 mg twice daily for 30 days”. Side effects were terrible, but showed improvement in couple of weeks. Doctor said could not take long term and would then switch to maintenance drug, Acitretin, 10 mg daily. This drug did nothing. Switched back to Cyclosporine for another 30 days with improvements, then to Acitretin 50mg daily. Again, swallowing and inflammation is increasingly worse, along with new symptoms. I am contacting doctor tomorrow.
My last EGD was four months ago at MUSC, so I’m feeling like it needs to be dilated again, as well as working toward finding a medication to manage symptoms.
Your comments and experiences have helped me so much this evening. We sure have to be our own advocate on this journey as so little is known in the general medical field about this disease.