I have been receiving treatment for vulval LP for 15 months , oral for 6 months and my oesophageal LP has just been diagnosed , although suffered for about 2 years with this element which was originally put down to acid reflux
@suewq Have you called GARD https://rarediseases.info.nih.gov/contact. They are your best bet for finding a doctor who understands ELP. You may have to travel a short distance, but it would be worth it!
Please call!
The Esophageal Lichen Planus has now gone into my fingernail and toenail along with my esophagus, mouth and skin! Has anyone experienced this? My fingernail began to loosen as a new nail was beginning to grow underneath. It's so strange!! Has anyone experienced this in their nails? It's also causing nausea daily so I'm now on Zofran nausea medication! I was diagnosed in Dec. 2022! This seems to moving quickly in my body. It is extremely difficult to eat!!! I have lost 35 pounds. I'm 5'5" and now weigh 120lbs.! This disease is a shocking battle in my life! Ughhh😩
Have you looked into fungal infection? It's often difficult to regulate the microbiome when there's neurology swallowing issues. Also autoimmune has been known to affect the gut microbiome.
I just learned fungus can live off ketones, although bacteria and virus ...
Please don't waste time getting this treated, and theres lots of things one can do that work together as there are some resistant fungus...
I started symptoms approx 5 years ago .
However only diagnosed about 15 months ago as everything was being labelled “menopause” .
I have lost 50 pounds now ,
My concerns about the medication is really that I do not know anyone else who has been diagnosed and treated for oral , vulval and oesophageal LP , and my gastroenterologist had never heard of this , and therefore I feel that it is a stab in the dark with the treatment suggested !
I think I am coming to the conclusion that I need to start this treatment and hope it has a positive impact
Hi! I'm sorry you're struggling to eat! 50lbs. is a lot! Is it the pain in your mouth keeping you from eating? My mouth is raw with a few lesions that won't go away. I'm down 35lbs. I also have not accepted taking oral Dexamethasone. I was diagnosed 5 most. ago although I was having symptoms in my esophagus thinking it was gastric reflux. Which medication are you considering? I feel like my general doctor is just throwing steroids at me! She's never seen this disease before and isn't familiar with treatment! I would love to talk to you. At times I feel so alone with it. My husband tries so hard to help. He worries about me and is concerned about my weight loss. I'm 63 yrs. old and live in WA. state. I'm also interested in hearing about the the treatment you receive. ❤️
I routinely have my esophagus stretched every 4 months now. I have a great GI doctor who is willing to do it as soon as I start having trouble eating. I had an open wound on my left calf for 12 years that wouldn't heal - and my doctors tried every cream/potion/ointment/lotion/treatment known to man. What finally worked was acupuncture. I was lucky, my health plan paid for the acupuncture.
I have mine routinely dilated now every 4 months too. It started out every 2 weeks and we've progressed up. Also have a fantastic doctor. I have oral lp but not a really bad case as well as in my nose and ears. I don't have skin lp. Also believe I have it on my eyelids and in my eyes but haven't been diagnosed officially.
So glad you too have a great doctor! It makes all the difference in the world to find someone who cares about you and does his/her best to help with this nasty disease.
Becky, Volunteer Mentor | @becsbuddy | Jun 27, 2023
@snowfire@daisy46
I strongly suggest that you contact GARD, Genetic and Rare Diseases. They are there to help you find knowledgeable doctors and the care you need.
“Patients, family members, and caregivers may contact GARD by phone or our contact form. Our Information Specialists provide personalized responses that are easy to understand, free of charge, and confidential.
GARD Information Specialists can help find information about:
Rare diseases
Finding specialists
Patient organizations
Organizations that may provide financial, disability, or travel support
Clinical studies
International rare disease organizations
Support for caregivers
Resources for people who suspect they have an undiagnosed rare disease
We also encourage you to look at our Resource section below. These resources address common needs of rare disease patients and families, including contact information for rare disease centers outside of the United States.
Important: GARD provides information about genetic and rare diseases for your general knowledge and is not a substitute for a doctor's advice.”
Will you call this week and then tell me if you learn something?
Hello @petlover777, Welcome to Connect. I wasn't able to find other members who have posted about esophageal lichen planus but hopefully your discussion will help bring in members to share their experience with you. While we wait I thought I would share this article which may help answer questions you might have.
"Esophageal lichen planus is a rarely reported manifestation of lichen planus, presenting itself commonly in middle-aged women, with symptoms such as dysphagia. "
-- Esophageal lichen planus: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4516088/.
Do you mind sharing what symptoms cause you the most trouble?
Hi petlover, I have ELP also. I was diagnosed in January. The most troubling symptom I have is my esophagus. My esophagus gets swollen at times which makes swallowing concerning. For example I have choked on bread. Sometimes when I swallow liquids it causes me to belch several times causing foam to come up. I will have to have my esophagus stretched. I have lesions on my legs, back, chest and in my mouth. It has gone into the tissue under a couple of my fingernails. It causes my fingernail to come off. There is not a doctor around here that has ever had a patient with ELP. Many of them don't know what it is. I appreciate knowing someone who has this rare disease!❤️
Becky, Volunteer Mentor | @becsbuddy | Aug 8, 2023
HELLO, @sadea0208 I’m really sorry to hear that you have ELP. It is certainly not an easy one to deal with. https://rarediseases.org/rare-disease-centers-of-excellence/.
Have you checked out this website. It has lots of information that you may find helpful. Also check out https://rarediseases.info.nih.gov/contact/
They have information that may be helpful to your doctors, too.
Make it your goal to learn as much as you can so you can advocate for yourself!
Will you please tell me what you learn from the websites?
I've had ELP since 2008 and I've had 36 endoscopies with dilation to date - I have the 37th on Weds of the upcoming week. I'm very sorry to hear that your ELP causes you pain! I have discomfort following an endoscopy for a few hours but never extreme pain. What do you do to ease the pain?
Connect
Connect
Like
Helpful
Hug
@suewq Have you called GARD https://rarediseases.info.nih.gov/contact. They are your best bet for finding a doctor who understands ELP. You may have to travel a short distance, but it would be worth it!
Please call!
-
Like -
Helpful -
Hug
1 ReactionHave you looked into fungal infection? It's often difficult to regulate the microbiome when there's neurology swallowing issues. Also autoimmune has been known to affect the gut microbiome.
I just learned fungus can live off ketones, although bacteria and virus ...
Please don't waste time getting this treated, and theres lots of things one can do that work together as there are some resistant fungus...
Hi! I'm sorry you're struggling to eat! 50lbs. is a lot! Is it the pain in your mouth keeping you from eating? My mouth is raw with a few lesions that won't go away. I'm down 35lbs. I also have not accepted taking oral Dexamethasone. I was diagnosed 5 most. ago although I was having symptoms in my esophagus thinking it was gastric reflux. Which medication are you considering? I feel like my general doctor is just throwing steroids at me! She's never seen this disease before and isn't familiar with treatment! I would love to talk to you. At times I feel so alone with it. My husband tries so hard to help. He worries about me and is concerned about my weight loss. I'm 63 yrs. old and live in WA. state. I'm also interested in hearing about the the treatment you receive. ❤️
I have mine routinely dilated now every 4 months too. It started out every 2 weeks and we've progressed up. Also have a fantastic doctor. I have oral lp but not a really bad case as well as in my nose and ears. I don't have skin lp. Also believe I have it on my eyelids and in my eyes but haven't been diagnosed officially.
-
Like -
Helpful -
Hug
3 ReactionsSo glad you too have a great doctor! It makes all the difference in the world to find someone who cares about you and does his/her best to help with this nasty disease.
@snowfire @daisy46
I strongly suggest that you contact GARD, Genetic and Rare Diseases. They are there to help you find knowledgeable doctors and the care you need.
“Patients, family members, and caregivers may contact GARD by phone or our contact form. Our Information Specialists provide personalized responses that are easy to understand, free of charge, and confidential.
GARD Information Specialists can help find information about:
Rare diseases
Finding specialists
Patient organizations
Organizations that may provide financial, disability, or travel support
Clinical studies
International rare disease organizations
Support for caregivers
Resources for people who suspect they have an undiagnosed rare disease
We also encourage you to look at our Resource section below. These resources address common needs of rare disease patients and families, including contact information for rare disease centers outside of the United States.
Important: GARD provides information about genetic and rare diseases for your general knowledge and is not a substitute for a doctor's advice.”
Will you call this week and then tell me if you learn something?
-
Like -
Helpful -
Hug
1 ReactionHi petlover, I have ELP also. I was diagnosed in January. The most troubling symptom I have is my esophagus. My esophagus gets swollen at times which makes swallowing concerning. For example I have choked on bread. Sometimes when I swallow liquids it causes me to belch several times causing foam to come up. I will have to have my esophagus stretched. I have lesions on my legs, back, chest and in my mouth. It has gone into the tissue under a couple of my fingernails. It causes my fingernail to come off. There is not a doctor around here that has ever had a patient with ELP. Many of them don't know what it is. I appreciate knowing someone who has this rare disease!❤️
-
Like -
Helpful -
Hug
2 ReactionsHELLO, @sadea0208 I’m really sorry to hear that you have ELP. It is certainly not an easy one to deal with.
https://rarediseases.org/rare-disease-centers-of-excellence/.
Have you checked out this website. It has lots of information that you may find helpful. Also check out
https://rarediseases.info.nih.gov/contact/
They have information that may be helpful to your doctors, too.
Make it your goal to learn as much as you can so you can advocate for yourself!
Will you please tell me what you learn from the websites?
-
Like -
Helpful -
Hug
1 ReactionHi, I had diagnosed with ELP in 1999, since then I had about 10 EGD with dilation. Extremely painful, and limited your every day living.
-
Like -
Helpful -
Hug
2 ReactionsI've had ELP since 2008 and I've had 36 endoscopies with dilation to date - I have the 37th on Weds of the upcoming week. I'm very sorry to hear that your ELP causes you pain! I have discomfort following an endoscopy for a few hours but never extreme pain. What do you do to ease the pain?
-
Like -
Helpful -
Hug
2 Reactions