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

Responses (22)

marymulderrig 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.

lgjacks1211 2 Aug 2016

I have been diagnosed about a year ago and it seems to worsen. I get esophagus dilated about every three months as I have bad strictures in different places. I haven't been given any medication for the treatment and I have seen two gastroenterologists. What do you take as medication for this?

marymulderrig 2 Aug 2016

I received a number of different treatments before finally landing on one that has helped the most. I currently get one dose of Rituxan (375mg/m2) intravenously every two months. Everything else I tried before this provided very little efficacy in general and a whole host of side effects. The cost benefit ratio on a day to day basis was unsustainable. I was requiring dilatations frequently, suffering from infections, etc. due to the meds. All the while irreversible damage and fibrosis of my esophagus was ongoing. I tried Cellcept, Budesonide slurry, Methotrexate, etc., all with poor results.

Sam17 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.

Chellypip1 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

sickofbeingsick2 5 Apr 2018

After 15 EGD's and esophageal dilations, my new gastroenterologist thinks I might have esophageal lichen planus. However I have symptoms in many other areas... nails, scalp, legs, hearing, scarring in ears. Open lesions turned into cellulitis infection. Trying to get diagnosed has been a nightmare because my insurance doesn't want to cover the doctors who have the experience to diagnose and treat these types of rare conditions. I went deaf, had the bone between my sinus and brain start to erode, my scalp eaten to my skull, plus a whole lot more, all the while fighting my insurance company for approval to see qualified specialists FOR YEARS. For a long time I was led to believe it was Medicaid's fault for my being refused, but that was just my insurance company pushing me towards their own medical health care network of physicians and hospitals.

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

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.

ladykm 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,
there is as yet no cure for esophageal lichen planus. It is an autoimmune skin and mucousal disease and for most people the cause is unknown. Prednisone helps temporarily, in easing /the symptoms, but as soon as you stop taking it, the disease comes back with a vegence. Immunosuppresive meds leave you wide open to catch every little bug that comes along. My doc suggests small meals, well chewed, nothing too spicy, Keep a glass of water or milk handy to wash it down if necessary. Aloe Vera Gel seems to have a healing effect . I have also tried Flovent Inhaler ( 2 puffs swallowed / not inhaled) twice a day. It seems to help but you have to watch out for development of Thrush .

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.

Cindyyandell 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.

Joycegeo 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!!

ladykm 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!

good4unurse35 21 Jul 2016

I too was treated with rituxan. I agree what an amazing difference. Unfortunately medicare wont cover it since there is no FDA label for this diagnosis. Now trying methotrexate. I have been battling this for 6 years now and it simply won't go away. but the rituxan did give me the most relief.
I would love to know if a support group was ever formed. Or if there is still interest in one.

ladykm 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.

good4unurse35 21 Jul 2016

All I can say is BIOPSY, Biopsy, biopsy!!!

chochosan 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 Remicade 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!!!

Shachsmom 31 Aug 2016

I have had oral LP for many years. About 18 months ago I started having problems again, although it wasn't diagnosed as LP until just recently. About the same time the oral LP started, I began having vaginal problems, diagnosed as vaginal LP. A year ago I started having trouble swallowing - choking feeling and pain. An upper endoscopy showed an ulcer in my esophagus, which has since healed, although I still have the choking feeling occasionally. After reading a little about ELP, I'm pretty sure that's what I have. I have a new symptom, however and would like to know if anyone else has experienced it. About 4 months ago I started vomiting every time I would eat. Zofran has helped me keep food down, but so far no one has been able to diagnose what is causing this problem. I read somewhere that LP can also affect the stomach and intestines. Has anyone else had this happen to them? I'd really like to hear from anyone who has.

marymulderrig 2 Sep 2016

Occasionally I'll regurgitate into my mouth. Not really that often. I would recommend you talk to your GI doc this. Also you should probably be on something long term to prevent ongoing damage and fibrosis to your esophagus. Hope you feel better soon!.

Shachsmom 3 Sep 2016

Thanks, mary... I'm waiting to hear from my Hi doc.

hdledroc 1 Sep 2016

I was diagnosed with ELP in 2008. I go to Mayo in Rochester Mn and see GI Dr. I use Flovent aerosol swallowed and it has helped immensely. I use it twice a day. I have not had any major issues for a few years. This seems to be keeping it under control. I go once a year now for a trans nasal Esophgostomy to check for lisions etc

teloiv 13 Sep 2016

I was diagnosed with Lichen Planus on the left side of my cheek and tongue about 4 years ago. I had no symptoms other than white netting. I had to have a biopsy for the definitive diagnosis. Up until recently I had no symptoms. I am a 68 year old woman in otherwise good health.
This spring I started with what I thought was a sinus infection but ended up being walking pneumonia. Now I am being treated for Gerd with no response.
Can some of you tell me how you found out you have ELP and what symptoms you had?
I now see the white netting is in the back of my throat and the LP in my mouth feels like it is burning and this feeling of a burning sensation goes from my sinuses down my throat.

marymulderrig 19 Sep 2016

Found mine after multiple food impactions resulted in my being dilated. Often the first signs are difficulty or pain on swallowing. If you have either you should chat to your doc about having an upper egd. I've had the burning mouth. It's unpleasant but I can say that it does eventually pass. Hope you feel better soon!

murphyl 19 Sep 2016

Hi. I am a concerned mum whose 14 year old has elp. He has had dilation six times since December. It began to stretch nicely at the beginning but now it keeps getting smaller. He hasnt had any medicines and they were talking about transplanting parts of his oesophagus. I am quite overwhelmed by all this and just by reading these posts feel i am not on my own. I live in the uk and cant seem to find any relevant information.any help would be greatly appreciated.x

marymulderrig 19 Sep 2016

First, I hope your son is doing okay and soon will be feeling much better! I would encourage you to have your doctors reach out via telephone to the gastroenterologists at the Mayo Clinic (Dr. David Katzka), or other centers (such as Cleveland Clinic, Johns Hopkins, etc) where many folks with ELP have been treated. You could even reach out to them directly yourself but often it helps to have your physician make the initial contact. (Look for gastroenterologists with an area of expertise in the esophagus). I hope you find the help you need and can avoid surgery and any additional dilations.
Best wishes,

murphyl 22 Sep 2016

Thanks mary. Spoke to consultant yesterday and he was quite open but hes a paediatric surgeon and said to speak to gastroenterologist and dermatologist to find out if its possible. They havent been able to take biopsies yet as they cant get a scope down as its too narrow. Wondering if its hereditary as my sister just been diagnosed with lichen schelosis x thanks again

Irmabobirma 7 Mar 2017

Hi. I am highly suspect that I have esophageal lichen planus. I am seeking a diagnosis. Doc referring me to a dermatologist. I have Lichen sclerosis in two places on my body.. and lichen planus on my tongue. Is there a support group for ELP... if you know of one, can you please direct me to it?

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