Esophageal Lichen Planus

I have had it for many years. I have had many dilations. Strictures made it so I couldn’t swallow anything. Once I had blockage by a single kernel of corn. No medicine seemed to resolve the issue. Now I am on meds for other issues and the ELP has resolved somewhat. It now only rarely causes problems. I’m worried my Dr who treats me will retire and I’ll be stuck again with Drs who have no clue about this problem and how only a paediatric scope will work on me.

What is ELP I have been swallowing issues since 2021 and they say it's a non motility disorder? How do I go by getting myself checked for ELP your symptoms sounds like mine. Thank you

May I ask what is your other condition and what medication are you taking for that which is helping your esophageal Lichen Planus?
Yes finding a good doctor is daunting.
Unfortunately there doesn't appear to be a cross the board 'auto immune specialist'. So many of us have multiple manifestations which require a variety of doctors :/
These are the conditions I have in order of manifestation:
Allergic rhinitis (early adult)
eczema
psoriasis
lichen planus on skin (50's)
lichen planus in mouth
lichen planus w strictures in throat (late 50's)
Psoriatic arthritis pain in hands feet (60)

Thanks in advance for sharing the medication that appears to be helping your ELP!

What is ELP I have been swallowing issues since 2021 and they say it's a non motility disorder? How do I go by getting myself checked for ELP your symptoms sounds like mine. Thank you

Hi, Esophageal Lichen Planus is a autoimmune disease. The immune system is attacking the mucus membranes in the body. The Lichen Planus in the esophagus causes strictures and bands around the esophagus. This squeezes the around the esophagus and can cause the esophagus to close. In the past four months I have had to have my esophagus stretched twice because food and pills were getting lodged. I would choke at times.
There are less than 50 people in the country that have ELP. I also have Oral Lichen Planus and Lichen Planus on my skin. It causes bumps and lesions in the mouth and skin. Yuck!!!😖
If you can, make an appointment with a gastroenterologist. ELP is so rare it can be a challenge to diagnose. In order to diagnose ELP the specialist will need to put a scope down into your esophagus and take biopsies. The doctor and the pathologist make the diagnosis.
There is not a cure for ELP or LP. It's a trial and error experience to find anything to help the symptoms. It's possible for the oral and skin Lichen Planus to go into remission for an unknown period of time.
I hope this helps you!❣️

Hi,
I have ELP which has spread to my mouth and skin. ELP is a disease where the immune system attacks the mucus membranes in the body. ELP is an extremely rare disease with less than 40 cases in the country in the medical journals. The specialists I have seen have never had a patient with ELP. They don't even know of a specialist in Seattle just south of us. Presently there's not a cure for LP, OLP, ELP etc..
In all of the research I have done on these diseases I have not read any information on OLP leading to ELP.
I began having unusual symptoms in my esophagus before it spread to my mouth and skin. I ignored the symptoms in my esophagus
If you're concerned about possibly having ELP I suggest you see a Gastroenterologist.
Take care!❤️