Hi, I'm sorry you're having such a difficult time with the ELP.
I have ELP, OLP and LP on my skin. I was diagnosed by a Gastroenterologist a couple of years ago.
He is a wonderful doctor!
I have had my esophagus stretched three times in the past year . The bands that are around the esophagus due to the ELP cause the esophagus to close.
I have never had pain under my sternum like you. My mouth is raw and I have sores. It's often very hard to eat. I have lost a lot of weight from all of this!
ELP is extremely rare. My doctor went to a convention for gastroenterologists in hopes to talk with a doctor that has had a patient with ELP.
Unfortunately, there was not a gastro doctor attending the convention that has a patient with ELP. There were gastroenterologists attending from all over the country.
You asked about medications. I take a strong medication twice a day for refluxing and burning in my esophagus. It really helps a lot!!!! I also use oral lidocaine gel. It helps but doesn't last long. I also use the dexamethasone rinse for ten days if I need it. This medication can only be used for ten days at a time. This is important. Have not taken steroids (dexamethasone) or the other meds you have. I try to avoid dexamethasone in pill form. I haven't have not had any so far. My general doctor wanted to put me on the it. I wouldn't take it.
The Lichen Planus on my skin has been in remission for a while. I do get a few sores but nothing like it was before. The remissions don't last forever unfortunately. I hope this helps you in some way. I'm here to talk to if you need. I really feel for you! Take care ❤️
Hello and thank you for taking the time to reply! It feels very lonely having this condition, on top of everything else. I hadn’t been told about the dexamethasone rinse for 10 days only. I appreciate that. I have a few other autoimmune issues going on so the treatments I receive are more aggressive I think. The chest pain feels horrible and the only thing that helps is Vicodin, but only for a few hours. I make myself eat though, even though my mouth hurts, because they already told me if I start losing weight I’ll be in even bigger trouble. I’ve eliminated almost all processed foods from my diet. Good luck with your OLP.❤️
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You probably know that ELP puts us at a very high risk for Esophageal Cancer. It's very important to have occasional biopsies done!!
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1 ReactionHello and thank you for taking the time to reply! It feels very lonely having this condition, on top of everything else. I hadn’t been told about the dexamethasone rinse for 10 days only. I appreciate that. I have a few other autoimmune issues going on so the treatments I receive are more aggressive I think. The chest pain feels horrible and the only thing that helps is Vicodin, but only for a few hours. I make myself eat though, even though my mouth hurts, because they already told me if I start losing weight I’ll be in even bigger trouble. I’ve eliminated almost all processed foods from my diet. Good luck with your OLP.❤️
Ah, one more thing to add to the list. Thank you again🥰