We are kindred spirits, daisy46. I'm glad you found a doctor that will dilate you as needed - it makes all the difference to have a sympathetic medical team. You might try acupuncture for the other LP areas if possible. It worked well for clearing up my leg wound.
Thanks snowfire. My ears, eyes, nose and windpipe are also compromised. Not sure that acupuncture is for me at this stage but thanks for the suggestion.
@daisy46. And @snowfire How difficult for you! What changes have you had to make in your diet so that you can get nutrition? I can understand the weight loss before you got treatment, but are you still losing weight? I’m so sorry all this has happened to you. You know, you don’t sound bitter or angry, so that gives hope to others-thank you. How do you stay positive?
No, I am no longer losing weight. I look for protein-dense foods I can eat and/or drink. I eat fresh fruits and vegetables as often as I can. I have learned to love soup! I live my life by the belief that the only thing I can control in my situation is my attitude about it - so I try to live as full and as happy a life as I can under the circumstances. I remind myself and others that it could be worse and I am lucky that it isn't a life-threatening condition. I surround myself with positive, supportive people and fun activities. It helps that I'm retired so I can structure my own time.
I appreciate your response! I feel alone with this disease. The doctors and specialists I've seen have never seen a patient with ELP. I was diagnosed last year although I had symptoms in my esophagus which spread to my mouth. My lips and mouth sting with even toothpaste! My esophagus stings with carbonated drinks! Now I have a few lesions on my legs. I've now lost over 30lbs.
Thanks again!
I appreciate your response! I feel alone with this disease. The doctors and specialists I've seen have never seen a patient with ELP. I was diagnosed last year although I had symptoms in my esophagus which spread to my mouth. My lips and mouth sting with even toothpaste! My esophagus stings with carbonated drinks! Now I have a few lesions on my legs. I've now lost over 30lbs.
Thanks again!
@sadea0208 Sounds like you’re having a bad time with ELP. Have you been able to go to a university hospital in your state? They are much more up-to-date with rare diseases.
You may also want to contact NORD- the National Organization for Rare Diseases. They are able to help with all sorts of information. https://rarediseases.info.nih.gov/contact/
Do you think you could contact either of these resources?
@sadea0208 Sounds like you’re having a bad time with ELP. Have you been able to go to a university hospital in your state? They are much more up-to-date with rare diseases.
You may also want to contact NORD- the National Organization for Rare Diseases. They are able to help with all sorts of information. https://rarediseases.info.nih.gov/contact/
Do you think you could contact either of these resources?
Sorry I think I made that comment already on here! Hope you're getting some more help. I was also the only patient they had/have with elp so it was a journey to get to the solution. I have an unbelievable doctor which really helps.
Sorry I think I made that comment already on here! Hope you're getting some more help. I was also the only patient they had/have with elp so it was a journey to get to the solution. I have an unbelievable doctor which really helps.
@daisy46 I love your statement the you have an incredible doctor! Have they gotten your esophageal lichen planus under control? Can you tell us what the doctor has done to be incredible?
I have recently been diagnosed with oral , vulval and esophageal lichen planus.
I use topical steroids to treat the oral and vulval lichen plans and have been proposed the following medication to treat my oesophageal LP. - Prednisolone, followed my methotrexate. I am interested to hear of the medications that have been used for others as this appears a rare condition with little knowledge of treatment.
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Thanks snowfire. My ears, eyes, nose and windpipe are also compromised. Not sure that acupuncture is for me at this stage but thanks for the suggestion.
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2 ReactionsNo, I am no longer losing weight. I look for protein-dense foods I can eat and/or drink. I eat fresh fruits and vegetables as often as I can. I have learned to love soup! I live my life by the belief that the only thing I can control in my situation is my attitude about it - so I try to live as full and as happy a life as I can under the circumstances. I remind myself and others that it could be worse and I am lucky that it isn't a life-threatening condition. I surround myself with positive, supportive people and fun activities. It helps that I'm retired so I can structure my own time.
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Helpful -
Hug
3 ReactionsI appreciate your response! I feel alone with this disease. The doctors and specialists I've seen have never seen a patient with ELP. I was diagnosed last year although I had symptoms in my esophagus which spread to my mouth. My lips and mouth sting with even toothpaste! My esophagus stings with carbonated drinks! Now I have a few lesions on my legs. I've now lost over 30lbs.
Thanks again!
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Helpful -
Hug
3 Reactions@sadea0208 Sounds like you’re having a bad time with ELP. Have you been able to go to a university hospital in your state? They are much more up-to-date with rare diseases.
You may also want to contact NORD- the National Organization for Rare Diseases. They are able to help with all sorts of information.
https://rarediseases.info.nih.gov/contact/
Do you think you could contact either of these resources?
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Helpful -
Hug
1 ReactionI looked up ELP on NORD and couldn't find it. Is it there under another name?
@snowfire I looked up lichen planus on NORD and there are so many types! Guess you will need to go through them and see where your symptoms fit in. You might also try the GARD website. GARD stands for genetic and rare diseases
https://rarediseases.info.nih.gov/diseases/12673/actinic-lichen-planus/
NORD:
https://rarediseases.org/rare-diseases/lichen-planus/
I hope you find something. Please let me know if you do!
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1 ReactionYes I have it. I have been getting esophageal dilations regularly and this has helped enormously.
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1 ReactionSorry I think I made that comment already on here! Hope you're getting some more help. I was also the only patient they had/have with elp so it was a journey to get to the solution. I have an unbelievable doctor which really helps.
@daisy46 I love your statement the you have an incredible doctor! Have they gotten your esophageal lichen planus under control? Can you tell us what the doctor has done to be incredible?
I have recently been diagnosed with oral , vulval and esophageal lichen planus.
I use topical steroids to treat the oral and vulval lichen plans and have been proposed the following medication to treat my oesophageal LP. - Prednisolone, followed my methotrexate. I am interested to hear of the medications that have been used for others as this appears a rare condition with little knowledge of treatment.
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Like -
Helpful -
Hug
1 Reaction