Erosive oral lichen planus

Posted by germany2 @germany2, Mar 20, 2017

Hello
I'm new to the group. I was diagnosed with erosive lichen planus 4 years ago and it has been a nightmare since. Mine has progressed from my mouth to my esophagus, nose and eyes. I've seen so many doctors @ Vanderbilt and St Thomas Hospital who have no idea how to treat my illness. I've. Even advised to go to the Mayo Clinic in Rochester but I'm really not sure what doctor or doctors have experience with treating this disease. Any help would be appreciated
Thanks

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@microgirl

Hello everyone,
I had an appointment with my specialist yesterday. I am so excited with my results!!! He was very pleased and said, "wow, it looks like you have a whole new mouth!" I mentioned that I am trying an anti-inflammatory diet to which he said that studies don't show that that is helpful, but that that is healthy and he is not against "non-conventional" methods. I think doctors want to treat symptoms rather than find a cause sometimes. My specialist is very good and I trust him, but I want to try to do what I can to take ownership of my condition/body.
So I am dropping down from 4x per day clobetasole on my gums to 3x per day, also using an anti-rejection rinse 3x per week and I will see him in 6 months as opposed to 3 months!
I have been trying to eliminate processed foods as best I can, simple sugars, I use lozenges for dry mouth and have changed my toothpaste from Crest to baking soda toothpaste. I am basically trying what I can to boost my immunity with fresh veggies, fruits, nuts, chia seeds, flax seeds, etc.
I pray that others may have good results soon,
microgirl

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Like what you did and took charge. Coodos to you.. I have to use baking soda also and gargle with a little peroxide in some water.

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@becsbuddy

@microgirl What a great report! Please stay with Connect—you’ll be such a great help to others! Becky

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Hi everybody. I've been missing again, hospitalized following that blackout and bad fall June 01, after being sent home from E.R. May 31. Slight concussion so had to get mobility back again,. Discharged June 08 but terrible 40 hour marathon of impacted bowel that just ended today. Would not consider 3rd ambulance/hospital in 10 days! Nearly lost all hope, but I'm back with my hopeful attitude once more. Lol. Hospital dietician sent my seniors' residence a 6 page directive for what I can or cannot eat, and my res. here can accommodate. Been here 4 years and never knew they could do that. More hope!! Missed all of you. Laur

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@artist01

Hi everybody. I've been missing again, hospitalized following that blackout and bad fall June 01, after being sent home from E.R. May 31. Slight concussion so had to get mobility back again,. Discharged June 08 but terrible 40 hour marathon of impacted bowel that just ended today. Would not consider 3rd ambulance/hospital in 10 days! Nearly lost all hope, but I'm back with my hopeful attitude once more. Lol. Hospital dietician sent my seniors' residence a 6 page directive for what I can or cannot eat, and my res. here can accommodate. Been here 4 years and never knew they could do that. More hope!! Missed all of you. Laur

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@artist01 Laurie! So happy to see your pretty face back with us! Your absence hasn’t gone unnoticed, m’dear! I’d say you’ve had enough of this medical drama stuff for a while now. Let’s hope and pray you are on the road to recovery for the long haul!
You have a great medical team behind you! It’s wonderful a dietician has been added to your ‘people’ so you can get exactly what you need to stay healthy. And apparently “moving”…if you catch my drift! 😉 How super that your residency kitchen can make food to follow your diet plan. What’s for dinner??

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@loribmt

@artist01 Laurie! So happy to see your pretty face back with us! Your absence hasn’t gone unnoticed, m’dear! I’d say you’ve had enough of this medical drama stuff for a while now. Let’s hope and pray you are on the road to recovery for the long haul!
You have a great medical team behind you! It’s wonderful a dietician has been added to your ‘people’ so you can get exactly what you need to stay healthy. And apparently “moving”…if you catch my drift! 😉 How super that your residency kitchen can make food to follow your diet plan. What’s for dinner??

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@loribmt 🤣 Yep, I get your drift! Dinner was a salmon filet, mashed up carrots, and a smashed up baked potato. Didn't think I could eat anything but had to follow my doc's orders today. Surprised myself and ate a fair bit. First nourishment in days!
P.S. One of my sons and his wife gave me a pair of slippers for Xmas with "Trauma Queen" embroidered on top. How appropriate is that?!! Lol X0X0 Laurie

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@mfratt

Like what you did and took charge. Coodos to you.. I have to use baking soda also and gargle with a little peroxide in some water.

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@mfratt I use that baking powder toothpaste too, Arm & Hammer brand here. Soothing choice for OLP. I just purchased Desert Essence
Cocanut Oil Pulling Rinse (Mouthwash). Don't know yet what "Pulling"
might do, but anything is worth a try. Has anyone tried it? Take care. Laurie

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@artist01

Hi everybody. I've been missing again, hospitalized following that blackout and bad fall June 01, after being sent home from E.R. May 31. Slight concussion so had to get mobility back again,. Discharged June 08 but terrible 40 hour marathon of impacted bowel that just ended today. Would not consider 3rd ambulance/hospital in 10 days! Nearly lost all hope, but I'm back with my hopeful attitude once more. Lol. Hospital dietician sent my seniors' residence a 6 page directive for what I can or cannot eat, and my res. here can accommodate. Been here 4 years and never knew they could do that. More hope!! Missed all of you. Laur

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What an eventful start to your summer! I hope you’re doing much better now. Did the doctors say what caused the blackout? Must have been scary!
Please stay healthy—we need your bright and cheerful attitude! Becky

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@deb1956

Also had all the auto immune tests done that came back neg. Just want this pain to stop. Has created depression/anxiety which only aggravates it even more

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@deb1956 Good morning. Just wondering if you’ve been able to find anything that helps with the OLP? You mentioned that the OLP has gone into the esophagus and what kind of doctor looks at that. You might try an ENT (ear, nose, and throat).
Hope to hear from you! Becky

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@becsbuddy

What an eventful start to your summer! I hope you’re doing much better now. Did the doctors say what caused the blackout? Must have been scary!
Please stay healthy—we need your bright and cheerful attitude! Becky

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@becsbuddy Hi Becky. Thankyou for the cheer-up! Yep, the doctors know (all) the thing(s) that cause my (many) blackouts. Not to worry. They get to pay their mortgages bc of me and all my conditions, I'm sure. Lol. They have mostly resorted to saying I'm a challenge, or that I'm complicated, etc.
Today was a little better day, so I should be hitting the walking trail again sometime soon. My friend today cautioned me to keep in mind the story of the race between the tortoise and the hare. Slowwww... Good to be back with our Mayo folks again. Hugs, Laurie

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It has been a while since my last post. I Live in Arizona and found two very helpful treatments that have helped my with my OLP. I am scheduled quarterly with Dr Seena Patel DMD MPH in Phoenix. I have very painful OLP on the inside of my mouth on both sides. I have a micro dose of Cortisone injected to the lesions on both sides of my mouth if needed; or one side I only need one. She also checks for any changes in my mouth and throat. I have my teeth cleaned quarterly. I avoid all dairy products as prescribed by my former Specialist in San Francisco. I am now able to manage the pain and eat better. I walk about 2 miles a day and work at the gym every other day to maintain strength. It is still difficult and slow to eat but I am very happy about the OLP pain reduction. I also have Vaginal LP. The medical treatment there is one of the steroid creams. It helps with the pain. My concern as always is the fear that any of these lesions could turn to cancer. However I do have confidence that I am getting great treatment. The best I have had in the 40 since I was diagnosed with LP. I wish you good luck and less pain! Mary.

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@maryz

It has been a while since my last post. I Live in Arizona and found two very helpful treatments that have helped my with my OLP. I am scheduled quarterly with Dr Seena Patel DMD MPH in Phoenix. I have very painful OLP on the inside of my mouth on both sides. I have a micro dose of Cortisone injected to the lesions on both sides of my mouth if needed; or one side I only need one. She also checks for any changes in my mouth and throat. I have my teeth cleaned quarterly. I avoid all dairy products as prescribed by my former Specialist in San Francisco. I am now able to manage the pain and eat better. I walk about 2 miles a day and work at the gym every other day to maintain strength. It is still difficult and slow to eat but I am very happy about the OLP pain reduction. I also have Vaginal LP. The medical treatment there is one of the steroid creams. It helps with the pain. My concern as always is the fear that any of these lesions could turn to cancer. However I do have confidence that I am getting great treatment. The best I have had in the 40 since I was diagnosed with LP. I wish you good luck and less pain! Mary.

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Can I ask how you get your calcium without dairy products?

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