Anyone heard of esophageal lichen planus? Any support groups out there?

Responses (4)

15 Aug 2013

I was diagnosed with it earlier this year. It's very rare... ~80 cases documented world wide, so no support groups that I know of.

Votes: +0

27 Aug 2013

What are your symptoms, how did they confirm it and what type of treatment was prescribed? Are you better?
also what type of doctor is treating you?

I don't have a definitive diagnosis. they "think" it's what I have. A dermatologist has put me on steroids. I was having difficulty and pain swallowing so a GI doctor stretched my throat and I'm taking antacids so I really don't have any symptoms right now. I'm not sure I should stay on the steroids because they are so awful. I don't know what kind of doctor to go to.

Votes: +0
marymulderrig 27 Aug 2013

My symptoms include progressive difficulty (dysphagia) and painful (odynophagia) swallowing. Even swallowing fluids can be uncomfortable (if the bolus is too large). Due to some strictures that have developed solid food, if too large, can become impacted (a small grape last time) =8-0 My diagnosis was confirmed on biopsy and also by the appearance of my esophagus. I have had dilatation but it has only given short term relief.

I have seen a Dermatologist in NYC (Marc Grossman) who put me on Cellcept. Unfortunately it has not helped. I am looking in what is available at the National Institute of Health Rare Disease Dept. (Immunology/Dermatology docs) and also at the Mayo Clinic.

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Sam17 6 Sep 2013

Thanks Mary. Maybe we should form a support group? Let me know if you get any help at Mayo or the other place. sorry I can't see your message right now so I don't remember exactly where that was.

29 Jun 2014

I was diagnosed over a year ago by my specialist. I battled with swallowing, everything I ate felt like it was going down the wrong way and the burning sensation was felt all the way down my back. Some times my food made me choke and caused me to panic. I had reflux in the middle of the night and also woke up and had to sit up for the sensation to go away. My doctor carried out a number of tests, swallowing test where you carry around a computer to monitor the swallowing actions. Blood tests, bio-opsy, scopes, etc. I now take Entocord and Pariet, which has been a great help. I also go for annual scopes to ensure all is well.

Votes: +0
carvelrita 17 Nov 2014

I have the same symptoms and my Dr. sent me for a gastroscope, where they found the lichen planus in my esophagus. I'm seeing a gastroenterologist who has stretched my throat about 3 times now, about a year apart. I am also on an oral budesonide syrup, which I've gotten down to every 2nd or 3rd day. I still have to take very small bites and eat very slowly. I really don't like the stretching business since the IV in my hand hurts a lot. I'm 58 years old, female. Nice to know I'm not the only one. I live in Alberta Canada

17 Nov 2014

I have the same symptoms and my Dr. sent me for a gastroscope, where they found the lichen planus in my esophagus. I'm seeing a gastroenterologist who has stretched my throat about 3 times now, about a year apart. I am also on an oral budesonide syrup, which I've gotten down to every 2nd or 3rd day. I still have to take very small bites and eat very slowly. I really don't like the stretching business since the IV in my hand hurts a lot. I'm 58 years old, female. Nice to know I'm not the only one. I live in Alberta Canada

Votes: +0
Sam17 15 days ago

I was still trying to find a doctor to treat my lichen planus in the esophagus and went to an ENT. I brought all my records from 5 EGDs, pathology report, photos, etc. he did not look at them or even let me get thru my history. Before any exam he said it was GERD not lichen planus. Then he put a scope thru my nos into my throat and I could see on a little TV that my esophagus was swollen shut. Had a barium swallow today. I'll post again when I get the results. I did find a doctor at Johns Hopkins who said he was familiar with treating ELP and will travel to Baltimore if this ENT doctor doesn't help.

carvelrita 14 days ago

I also had the barium swallow, but it did not show anything, so then I went for the gastroscopy, and the doctor did a biopsy, and that is when the lichen planus diagnosis was made. The first treatment was with an inhaler for asthma, which I had to spray at the throat and them swallow. I don't think it worked very well. Now I have a thick syrup with budesonide in it, which seems to help.

Good luck with your procedures, and hopefully you find a good doctor.

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