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!!!
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.
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.
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.
I am on 2 mg a day Prednisone which is helping reduce the symptoms, but I am having side effects ( muscle and joint pain).
Lichen Planus is an autoimmune condition and very rare. Because of this, there is very little literature available an no studies taking place. I would be willing to start a support group, but am not sure how to go about it. Any ideas??
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 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!!
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.
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
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 . I need to get my esophagus dialated every 3 to six months . It becomes more and more difficult to swallow pills and I have found that several of my medications are also available is suspension form.
It is very difficult living with this disease with no cure on the horizon. I am looking for some sort of support group to talk things over with and to exchange ideas and to at least know that I am not alone with this.
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I am taking it for severe lichen planus.
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... this cure the problem? In other words, what can I expect?
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