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.❤️
Just diagnosed last week at Duke. Also had candida which the doctor is treating first. I had a manometry test Thursday. No results yet. I also have systemic scleroderma and have had lymphocytic colitis in the past. I meant drug allergies and a few environmental allergies which I understand can be an underlying factor. Any words of encouragement world be appreciated. Of course I have the rad on my arms and legs but because I've been on anticoagulants for years I just thought it was from them.
I really look forward to being able to eat again without passion swallowing and chest pain behind my sternum. Kate Farms meal replacement shakes have helped me to keep my nutrition and weight quite normal. I've only lost 10 pounds but the muscle mass loss from weakness and inactivity is unreal. I am in PT to build strength and work on my balance. I've had 5 orthopedic surgeries in the past 6 years. So the need for PT.
Just diagnosed last week at Duke. Also had candida which the doctor is treating first. I had a manometry test Thursday. No results yet. I also have systemic scleroderma and have had lymphocytic colitis in the past. I meant drug allergies and a few environmental allergies which I understand can be an underlying factor. Any words of encouragement world be appreciated. Of course I have the rad on my arms and legs but because I've been on anticoagulants for years I just thought it was from them.
I really look forward to being able to eat again without passion swallowing and chest pain behind my sternum. Kate Farms meal replacement shakes have helped me to keep my nutrition and weight quite normal. I've only lost 10 pounds but the muscle mass loss from weakness and inactivity is unreal. I am in PT to build strength and work on my balance. I've had 5 orthopedic surgeries in the past 6 years. So the need for PT.
I've had Esophageal Lichen Planus for 17 years. It is manageable if you can find a good gastroenterologist willing to do endoscopies with dilation when the swallowing becomes too difficult. For awhile, I was getting them every 4 months. I started receiving twice-yearly infusions of rituximab (a drug primarily for RA patients) last fall and I was able to delay the process to 7 months. Keep looking for those high-protein sources that can tide you over between endoscopies. I wish you great luck in finding the right medical support team!
I've had Esophageal Lichen Planus for 17 years. It is manageable if you can find a good gastroenterologist willing to do endoscopies with dilation when the swallowing becomes too difficult. For awhile, I was getting them every 4 months. I started receiving twice-yearly infusions of rituximab (a drug primarily for RA patients) last fall and I was able to delay the process to 7 months. Keep looking for those high-protein sources that can tide you over between endoscopies. I wish you great luck in finding the right medical support team!
I really like my doctor at Duke and the team that works with him. I couldn't care less about eating because it's so uncomfortable on so many levels. The scleroderma is bad enough with all the GI problems it has cause and to add this ELP to it is just another slap in the face. I'm not going to give up or give in. I'm a fighter. And yes, my GI doctor has already talked about the esophagus stretching. So I wait for their plan once they put all the pieces together. Hoping to take my Humira Friday. It does make me feel better. Been of of it for 2 weeks because of being on the Fluconazol for the thrush esophagitis. Which is better. Not gone but better.
Thank you for answering me. I'm just a little overwhelmed with all of this.
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.❤️
Hi! I have had several biopsies done when having my esophagus stretched a bit.
I have to have it stretched a few times a year. I have a very hard time eating anything. I eat anything I can. I have lost a lot of weight. I also have Lichen Planus in my mouth and breakouts on my legs.
Although, the LP on my legs has been in remission for a year now. Do you have LP in other areas also?
Like you, I have other autoimmune diseases.
Eating is very difficult for me too.
Thank you for your response. I would love to stay in touch with you since ELP is so rare.❤️. Take care!
I started with skin rash on my back in 2017...oral flare ups very minimal from 2019 until about 3 months ago....it has now progressed to erosive oral lichen planus with difficulty eating and talking due to pain. One month ago symptoms of painful swallowing started after a diagnosis of oral thrush but that was treated so now I wonder if it is esophageal lichen planus and/or esophageal thrush?
I see my dermatologist 5/6 for a consult. Until now my dentist has been providing prescriptions for triamcinolone dental paste which have stopped working and led to the oral thrush. I have been searching scientific journals and found 2 publications from early this year. Specifically about treatment of OLP. Both just completed their phase two human studies and have promising results for treatment.
Hi- 2 years later. 36 dilations! wow. i have had 7. due for #8. I have had OLP and ELP for about 5 years. Mayo was following me for spinal conditions and asked if anything else bothering me. I explained the burning mouth syndrome-they did an oral exam and found wickham striae and perforned an EGD/dilation w biopsy- came out Esophageal LP. (also have vulvar lichen scclerosus) Now, spine needs cervical fusion, laminotomy, foraminotomies and perhaps a corpectomy, depending on the surgeon I decide on, but I am well aware of they AFDC and Posterior surgery causing dysphagia/ swallowing issues post surgery from manipulation, fluid build up, etc-for average person resolves in a couple weeks. That said, I am trying to find a surgeon who has worked with ELP patients needing cervical surgery to correct a compressed spinal cord and other degenerative disease of the neck. Hard pressed. Can anyone help me identify the correct surgeon? Thank you, in advance..
Connect
Connect
Like
Helpful
Hug
You probably know that ELP puts us at a very high risk for Esophageal Cancer. It's very important to have occasional biopsies done!!
-
Like -
Helpful -
Hug
3 ReactionsHello 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.❤️
-
Like -
Helpful -
Hug
1 ReactionAh, one more thing to add to the list. Thank you again🥰
Just diagnosed last week at Duke. Also had candida which the doctor is treating first. I had a manometry test Thursday. No results yet. I also have systemic scleroderma and have had lymphocytic colitis in the past. I meant drug allergies and a few environmental allergies which I understand can be an underlying factor. Any words of encouragement world be appreciated. Of course I have the rad on my arms and legs but because I've been on anticoagulants for years I just thought it was from them.
I really look forward to being able to eat again without passion swallowing and chest pain behind my sternum. Kate Farms meal replacement shakes have helped me to keep my nutrition and weight quite normal. I've only lost 10 pounds but the muscle mass loss from weakness and inactivity is unreal. I am in PT to build strength and work on my balance. I've had 5 orthopedic surgeries in the past 6 years. So the need for PT.
-
Like -
Helpful -
Hug
2 ReactionsThank you
I've had Esophageal Lichen Planus for 17 years. It is manageable if you can find a good gastroenterologist willing to do endoscopies with dilation when the swallowing becomes too difficult. For awhile, I was getting them every 4 months. I started receiving twice-yearly infusions of rituximab (a drug primarily for RA patients) last fall and I was able to delay the process to 7 months. Keep looking for those high-protein sources that can tide you over between endoscopies. I wish you great luck in finding the right medical support team!
-
Like -
Helpful -
Hug
4 ReactionsI really like my doctor at Duke and the team that works with him. I couldn't care less about eating because it's so uncomfortable on so many levels. The scleroderma is bad enough with all the GI problems it has cause and to add this ELP to it is just another slap in the face. I'm not going to give up or give in. I'm a fighter. And yes, my GI doctor has already talked about the esophagus stretching. So I wait for their plan once they put all the pieces together. Hoping to take my Humira Friday. It does make me feel better. Been of of it for 2 weeks because of being on the Fluconazol for the thrush esophagitis. Which is better. Not gone but better.
Thank you for answering me. I'm just a little overwhelmed with all of this.
-
Like -
Helpful -
Hug
1 ReactionHi! I have had several biopsies done when having my esophagus stretched a bit.
I have to have it stretched a few times a year. I have a very hard time eating anything. I eat anything I can. I have lost a lot of weight. I also have Lichen Planus in my mouth and breakouts on my legs.
Although, the LP on my legs has been in remission for a year now. Do you have LP in other areas also?
Like you, I have other autoimmune diseases.
Eating is very difficult for me too.
Thank you for your response. I would love to stay in touch with you since ELP is so rare.❤️. Take care!
-
Like -
Helpful -
Hug
2 ReactionsI started with skin rash on my back in 2017...oral flare ups very minimal from 2019 until about 3 months ago....it has now progressed to erosive oral lichen planus with difficulty eating and talking due to pain. One month ago symptoms of painful swallowing started after a diagnosis of oral thrush but that was treated so now I wonder if it is esophageal lichen planus and/or esophageal thrush?
I see my dermatologist 5/6 for a consult. Until now my dentist has been providing prescriptions for triamcinolone dental paste which have stopped working and led to the oral thrush. I have been searching scientific journals and found 2 publications from early this year. Specifically about treatment of OLP. Both just completed their phase two human studies and have promising results for treatment.
-
Like -
Helpful -
Hug
1 ReactionHi- 2 years later. 36 dilations! wow. i have had 7. due for #8. I have had OLP and ELP for about 5 years. Mayo was following me for spinal conditions and asked if anything else bothering me. I explained the burning mouth syndrome-they did an oral exam and found wickham striae and perforned an EGD/dilation w biopsy- came out Esophageal LP. (also have vulvar lichen scclerosus) Now, spine needs cervical fusion, laminotomy, foraminotomies and perhaps a corpectomy, depending on the surgeon I decide on, but I am well aware of they AFDC and Posterior surgery causing dysphagia/ swallowing issues post surgery from manipulation, fluid build up, etc-for average person resolves in a couple weeks. That said, I am trying to find a surgeon who has worked with ELP patients needing cervical surgery to correct a compressed spinal cord and other degenerative disease of the neck. Hard pressed. Can anyone help me identify the correct surgeon? Thank you, in advance..