1. < Autoimmune Diseases

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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Mentor
Becky, Volunteer Mentor | @becsbuddy | Jun 2, 2019
In reply to @mrsdavis1 "Thank you Ms. Becky! I’m definitely not giving up. It’s an easy fix to just cut..." + (show)
@mrsdavis1

Thank you Ms. Becky! I’m definitely not giving up. It’s an easy fix to just cut physical pieces of people off without having to work to find a solution. However, the psychological impact is the most damaging in my opinion. It’s ironic that life has me going through the same cycles but in slightly different positions. Today it’s my time to decide to remove a part of my labia. Ten years ago I decided to not amputate my 8 day old son’s leg. Two totally different people, body parts, and varying degrees of disfigurement yet both would’ve been a one time procedure to eliminate a health issue that just needs more time to figure out.

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@mrsdavis1 Whoa! You’ve had some big decisions to make! Yes, just more time is needed. Is your son doing well? Just take your notes and go to the dermatologist. Explain the story to her/him, write everything down, find out if there’s a specialist you could/should see and take charge of your health! You seem like someone who can do this! Best of luck! Becky

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1 reply
mrsdavis1 | @mrsdavis1 | Jun 2, 2019
In reply to @becsbuddy "@mrsdavis1 Whoa! You’ve had some big decisions to make! Yes, just more time is needed. Is..." + (show)
@becsbuddy

@mrsdavis1 Whoa! You’ve had some big decisions to make! Yes, just more time is needed. Is your son doing well? Just take your notes and go to the dermatologist. Explain the story to her/him, write everything down, find out if there’s a specialist you could/should see and take charge of your health! You seem like someone who can do this! Best of luck! Becky

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My son was born with PFFD (Proximal Femoral Focal Deficiency) which is now referred to as CFD (Congenital Femoral Deficiency). He had reconstructive hip and knee surgery along with a pelvic osteotomy at 4. He’ll be 10 this month but we’re getting him prepared for staging to remove his hardware (6 titanium screws) before surgery number 3 of 6 remaining. He’s a special little guy and he’s strong. He wears a non-standard prosthetic leg now but when everything’s all over he’ll walk on both of his natural feet. As for me, I’m going to go to the dermatologist but I won’t be too quick to let them cut anything off of me.

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Mentor
Becky, Volunteer Mentor | @becsbuddy | Jun 2, 2019

@mrsdavis1 YOU ARE ONE STRONG WOMAN! WOW!

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deb1956 | @deb1956 | May 7, 2021
In reply to @destinnana "My throat concerns me as much as my burning mouth now. I don’t know whether to..." + (show)
@destinnana

My throat concerns me as much as my burning mouth now. I don’t know whether to think the BMS has moved into my throat or if acid reflux is so bad that it’s causing my throat to be on fire? Does anyone with burning mouth syndrome have the same problem in their throat?

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Yes. Was diagnosed with bms 4 months ago. Throat has been burning ever since. Started with sores, lesions, pain ever since. Been to dentist, 2 ENTs, gp. They have all dismissed me. Pain is unbearable. Going to a oral surgeon tomorrow. Hopefully will get some answers. Swallowing and throat issues started 7 months ago. Had GI work up at Mayo. Dr claimed it was esophageal hypersensitivity which dosen't explain the sores, ulcers, etc.

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1 reply
deb1956 | @deb1956 | May 7, 2021
In reply to @deb1956 "Yes. Was diagnosed with bms 4 months ago. Throat has been burning ever since. Started with..." + (show)
@deb1956

Yes. Was diagnosed with bms 4 months ago. Throat has been burning ever since. Started with sores, lesions, pain ever since. Been to dentist, 2 ENTs, gp. They have all dismissed me. Pain is unbearable. Going to a oral surgeon tomorrow. Hopefully will get some answers. Swallowing and throat issues started 7 months ago. Had GI work up at Mayo. Dr claimed it was esophageal hypersensitivity which dosen't explain the sores, ulcers, etc.

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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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1 reply
deb1956 | @deb1956 | May 7, 2021

I contacted Mayo went the bms started. Was told there was a 8 month wait to get in

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deb1956 | @deb1956 | May 7, 2021
In reply to @march13 "LP is treatable but never cured. I use Clobetasol gel for for lichen planus sclerosis on..." + (show)
@march13

LP is treatable but never cured. I use Clobetasol gel for for lichen planus sclerosis on vagina, clobetasol liquid for head. For my mouth I use Dexamethasone mixed with Nystaton. This a liquid steroid and with outbreak, rinse four times a day. Breakout at different times but using these drugs have kept LP under control and of course commitment to meds and lots of patience. I go to the only dentist in the largest city in US and past year have gone to Gynocoligist for vagina. Was going to dermatologist but was not very successful. Now I find out about escophageal LP which I did know about and am shocked. Scheduled for test on throat and hope it just needs to be stretched. Problem swollling.
Have had LP on and off 12. Hope I have been of help.

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I think mine has progressed to esophagus. What kind of dr is going to to test your esophagus

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deb1956 | @deb1956 | May 7, 2021
In reply to @mrsdavis1 "First of all, thank you for being so thorough with the process that has worked for..." + (show)
@mrsdavis1

First of all, thank you for being so thorough with the process that has worked for you. I’m new here and although I haven’t been diagnosed with LP yet I’m sure that I have it. I do a lot of research and my years of college study has always been in the medical arena. Anyway I have OLP and vaginal LP. I mentioned my symptoms and the possibility of me having LP to my OBGYN, only to be told “That’s an old lady’s disease.” I apologize to anyone that’s offended by that statement because I’m offended by it as well. I have other conditions that are considered to be “Geriatric conditions” so I wish they’d stop saying things like that. Anyway, I have been having really bad oral episodes lately which had me do more research on LP. I was treated with Whitecars Solution w/Nystatin. I was given two prescriptions for 900mL and was to swish and swallow 15mL 4x/day. Of course it wasn’t covered by my insurance (Medicare & Medicaid) so it cost me a total of $300. I lost 10lbs before my mouth was well enough to eat. I’m 5’2 and usually around 125lbs so my pants we’re pretty loose afterwards. I live in a small southern town now, so I’m having the hardest time getting properly diagnosed and treated for LP. As far as the vaginal LP they have for over a decade treated me for folliculitis. It’s been tested and proven to NOT be a herpatic rash. I’m just very frustrated with all of this. I’m 39 with 4 children and I’m disabled with cervical spinal stenosis that has moved down into the upper half of my thoracic region. I also have bulging discs in L-3 to S-1. Add in the CFS and sciatica, I’m in pain everyday of my life. I’ve seen more doctors and specialists than I care to admit to, yet I ALWAYS get contradictory reports. I’m a completely exhausted woman at this point and I’m just trying to find some answers anywhere that I can. So that’s why I’m here! I’ve found that talking to other people over the years have given me a lot more insight than the majority of the health care providers I’ve come across. They like to place everyone in what I call a cookie cutter frame because “I went to school and I have the degree” and my books state my diagnosis is correct. They don’t consider people as individuals anymore!

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Sorry you are going through so much. I am new to this group but wanted to let you know my experience with the Rx compounds. Walgreens wanted $200 for a small bottle. I ended up taking it to a lsmall local pharmacy and the price was 75% .

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microgirl | @microgirl | May 7, 2021
In reply to @mrsdavis1 "First of all, thank you for being so thorough with the process that has worked for..." + (show)
@mrsdavis1

First of all, thank you for being so thorough with the process that has worked for you. I’m new here and although I haven’t been diagnosed with LP yet I’m sure that I have it. I do a lot of research and my years of college study has always been in the medical arena. Anyway I have OLP and vaginal LP. I mentioned my symptoms and the possibility of me having LP to my OBGYN, only to be told “That’s an old lady’s disease.” I apologize to anyone that’s offended by that statement because I’m offended by it as well. I have other conditions that are considered to be “Geriatric conditions” so I wish they’d stop saying things like that. Anyway, I have been having really bad oral episodes lately which had me do more research on LP. I was treated with Whitecars Solution w/Nystatin. I was given two prescriptions for 900mL and was to swish and swallow 15mL 4x/day. Of course it wasn’t covered by my insurance (Medicare & Medicaid) so it cost me a total of $300. I lost 10lbs before my mouth was well enough to eat. I’m 5’2 and usually around 125lbs so my pants we’re pretty loose afterwards. I live in a small southern town now, so I’m having the hardest time getting properly diagnosed and treated for LP. As far as the vaginal LP they have for over a decade treated me for folliculitis. It’s been tested and proven to NOT be a herpatic rash. I’m just very frustrated with all of this. I’m 39 with 4 children and I’m disabled with cervical spinal stenosis that has moved down into the upper half of my thoracic region. I also have bulging discs in L-3 to S-1. Add in the CFS and sciatica, I’m in pain everyday of my life. I’ve seen more doctors and specialists than I care to admit to, yet I ALWAYS get contradictory reports. I’m a completely exhausted woman at this point and I’m just trying to find some answers anywhere that I can. So that’s why I’m here! I’ve found that talking to other people over the years have given me a lot more insight than the majority of the health care providers I’ve come across. They like to place everyone in what I call a cookie cutter frame because “I went to school and I have the degree” and my books state my diagnosis is correct. They don’t consider people as individuals anymore!

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Hello-I can hear the pain in your words and feel so badly that you are not being heard by doctors. I was diagnosed with oral and vaginal about 6 months ago. My dentist initially mentioned it and referred me to a periodontist in order to try to bring my gums to health. He did the biopsy for diagnosis and then referred me to a dermatologist who is a specialist in LP. (My gyno. said there was no sign of LP down there, but the specialist said, yes in fact it is there as well). I am using clobetesol gel orally 4x week at this point; originally it was every night plus minocycline. I also use a gel vaginally and I swish with an anti-rejection medication 4x week as well. I have seen some difference in my mouth-the extreme redness seems better-I am trying to figure out what foods or liquids affect my mouth. My tongue often feels as if it has been scraped. Stress is supposed to bring it on and I am stressed at the possibility of oral cancer developing as I have had two areas on my body with squamous cell carcinoma removed in the past. I am insulted by the "geriatric" reference! You are so young and with four children-so very busy! I hope you find relief soon.

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Mentor
Becky, Volunteer Mentor | @becsbuddy | May 7, 2021

Good morning all. @deb1956 and @mrsdavis1 Welcome to Connect. Everyone here is a volunteer and we try to help each other through our own experiences. But we are not doctors, so cannot prescribe medications. I’m going to ask @emal2 and @microgirl and @jshdma and @artist01 if they could share their experiences with you. While we wait for them, can you tell me what you have done so far to care for the oral lichen planus?

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