Skip to Content

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

Responses (10)

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.

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.

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.

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.

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

Sam17 6 Dec 2014

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 7 Dec 2014

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.

20 Jan 2015

ESOPHAGEAL LICHEN PLANUS was diagnosed for me about 6 years ago at UCLA after an endoscopy with numerous biopsies. Prior to that, my gastroenterologist was sure it was GERD and was treating me accordingly Unfortunately,

Sam17 14 Feb 2015

I am also interested in a support group. Do you see the other entries in this string? We could reach out to them. I am currently being treated only for reflux with the Flovent inhaler and although I still have som difficulty swallowing I am definitely better. My current doctor is convinced I don't have lichen planus, but I think he's wrong.

edmt 31 Jan 2016

Hi My name is Ed, I have been living with elp for 5 years now. It has now become more aggressive I live in Ft Myers where I am now treated by Dr Camisa, however, Dr Kini in ft myers is my gi doctor. I can't swallow pills. 6 months ago I went to Mayo Clinic for a plan of action. There plan was too aggressive for me. My GI doctor back in Ft Myers used part of their plan by another dialation bat also while under 4 injections of steroids, followed up with swallowing flutisone 2 sprays to back of throat then swallow for two weeks. Currently the difficulty swallowing has come back now after the 5 month improvement. For the oral, they recommend continue use of Dexmethazone, I am currently also using the swallowing of Budesonide nassal spray, just started back 4 days ago. There is no improvement right now , so it is difficult. My Gi Dr Kini is reluctant to do too much dialation because of the lining of the esophagus can be worn down by dilation and thus subject to tear.

27 Feb 2015

I was also confirmed to have esophageal lichen planus after a biopsy was taken by the gastrotologist. I have since been referred to a rheumatologist and a dermatologist who are both treating me. Previously I had three dialations but they were becoming necessary with increasing frequency which was not good and there was an expressed fear of tearing.
I am being treated with CellCept but it is too early to ascertain whether or not it will work. I would love to join your group should one be established.

Deedyh123 2 Mar 2015

I live in Florida but travel to Birmingham, Alabama to see my GI Doctor. I have been with him for two years now. We started out dialating my esophagus every six weeks. I had lost 30 lbs. by that time. We gradually increased EGD to every 3 months. I have been on budesonide for the last two years. I take 5ml twice a day.
My Dr sent me two weeks ago to a world renowned GI who only works with swallowing disorders. He is in Tampa, Florida. I was diagnosed with Esophageal Lichen Planus. We are having a difficult time finding someone to treat this disease. There is a dermatologist in Fort Meyers, Fl but that is a 9 hour trip each way for me. We are trying to save my esophagus. Unfortunately it is so rare that there is not alot of information on the Internet. A support group would be amazing for all of us.

cranelu4 26 Mar 2015

I live in Tampa Florida. Who is the GI doctor that you referred to? I have vulva lichen planus and suspect my swallowing disorder may be related. Any information you can provide would be appreciated.

4 Sep 2015

Just left the doctors office today after two years of symptoms and a previous diagnosis of esophagitis Dissecans superficialis. Today, my doc stated possible esophageal lichen planus. Nervous and starting the swallowed fluticasone. Let me know if a group is formed. Thank you!!

5 Sep 2015

I have been living with esophageal lichen planus for several years. It began as oral lichen planus and was diagnosed by my dentist. I was being treated for GERD by my gastroenterologist. I began to notice that whenever the oral lichen planus would flair up that I was also having difficulty swallowing. It took some persuading, but I finally convinced my gastroenterologist to test for it. Definitive diagnosis was made at UCLA Medical center gastroenterology. I have had repeated endoscopies and dilations. I have been treated periodically with short courses of Prednisone which helps while I am on it, but when I stop it comes back with a vengeance. Earlier this year I was hospitalized for 3 days with esophageal bleeding. They treated me with IV Nexium and Carafate 1 GM suspension. I was on a soft diet for a month and am now very careful not to eat anything spicy, too hot, too cold or scratchy to my throat.

marymulderrig 5 Sep 2015

Hi, since my comment in the past (2013) I have been treated with intra venous Rituxan (Rituximab). What a difference!! I receive it (once a week for four weeks every six months). I feel so much better! Unfortunately my esophagus had already suffered significant fibrosis so swallowing remains a challenge. That said I have not required dilatation in over a year and my general sense of well being is so much better. Also, in between the six monthly treatments I do not have to take any other immunosuppressive therapy or prednisone :-) Happy days! If I can answer any questions please feel free to ask and I am more than happy to pass on my docs contact info if your doc wishes to speak to them. Wishing you the best!

5 Sep 2015

Unfortunately, it is very difficult to convince these doctors that you have ELP. They like to diagnose GERD because they know how to treat that. I suspect esophageal lichen planus is one of the most underdiagnosed conditions out there. Anyone who has oral lichen planus, should be aware of the possibility that it can travel to the esophagus. ( It can also effect the nails, scalp and other mucous membranes.)
The more people who are definitively diagnosed, the more chance that some research and studies will take place.

4 Jan 2016

Is this a support group or not. If not let's make one. I'm 71 and was a hospital RN for 20 years then ran my own business for the next 16 years. Just retired last year. I have been diagnosed with lichnoid esophagitis with NO other involvement for two years. Three separate dilations and biopsies sent to special labs. Then diagnosed with psoriatic arthritis with almost NO skin involvement. Now have first oral lesion I will follow up on!!! Have been on SQ methotrexate for one year with prednisone but am due to start IV Remicaid in weeks. Hx of NO smoking but secondhand as child with new diagnosis of COPD along with hypertension suddenly acting up. Am just about fed up!!!

Search for questions

Still looking for answers? Try searching for what you seek or ask your own question.

Similar Questions

Has Lamisil tabs been tried for "Lichen Planus"?

I have had a bad case of Lichen Planus in my mouth for years and now it has gotten on my skin. Is there any cure known?

2 answers 2 Aug 2010

I was put on 3 x 600mg Flagyl for 18 days and now have Lichen Planus is there a connection?

I had blastocystis and was given the above dose of Flagyl which got rid of the problem. However now Lichen Planus has turned up I am thinking the ...

1 answer 22 Apr 2014

Is there a successful treatment of Lichen Planus? or anyone that's in my shoes?

I was diagnosed with LIchen Planus 3 weeks ago but have been suffering for more than 8 months. They believe from the biopsy that it might be from the ...

2 answers 23 Jul 2015

My Dermatologists just determined I have lichen planus and prescribed a potent steroid cream. Will?

... this cure the problem? In other words, what can I expect?

0 answers 7 Feb 2016