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
John, Volunteer Mentor | @johnbishop | Nov 15, 2021
In reply to @mskatrina12 "No, it really hasn't helped, but I'll try anything! This has been going on for almost..." + (show)
@mskatrina12

No, it really hasn't helped, but I'll try anything! This has been going on for almost 2 years, but it was just recently diagnosed. In the beginning I was staying home, staying away from all Doctor & Dentist offices due to Covid, and then once I began to venture out all I got was "Try this & come back in a month." "Now try this & come back in a month." "Hmm...Wonder what it might be? Maybe I'll send you to Dr. XXX." Well, 2 months later I had an appointment with Dr. XXX, and they then called & rescheduled it, but in the mean time another Dr. had me on Prednisone for 2 months, which had all kinds of crazy side effects. Then Dr. XXX did tests, told me briefly what I had, (Erosive Oral Lichen Planus), DIDN'T tell me that there's no cure, (Yippee!), kept me on Prednisone for a 3rd month and added Mycophenolate, which has a whole new set of crazy side effects, (DO I REALLY WANT TO DO THIS???), I haven't been able to eat ANYTHING but vanilla ice cream for over 6 months, because it freezes my mouth so I don't feel the pain, and there's no nutrition in vanilla ice cream. They now have me drinking vanilla Ensure, which burns like fire, but I drink it anyway....I'm terrified of taking the Prednisone & Mycophenolate (couldn't possibly be a worse time to be suppressing a persons immune system -- I'm 70 years old and visit my 97 year old mother in a long term care facility once a week. I've had 2 Covid vaccs, but can't get the booster because of the immunosuppressive drugs...). I'm also scared to NOT take the drugs, because I've read that this disease often causes oral cancer, especially in those over 65, and quite often on the side of the tongue --- and the side of the tongue is where I have it the worst. My Dr. hasn't told me any of this stuff yet. She's a Dermatolagist, very young, and probably excited to have an exciting case like this to deal with -- I hope! I've only seen her twice, so far...another "do this, and I'll see you in a month". Do they realize that a month is THIRTY DAYS??? Anyway, the more I read about this whole thing, the more terrified I become. Do I take the drugs, let them suppress my immune system, let whatever is hiding inside of me or whatever I run into outside of me get ahold of me and finish me off........or do I NOT take the drugs, let the disease continue to destroy the inside of my mouth, possibly travel to the esophagus, nose, eyes, or maybe just cause cancer and get it over with sooner? No one to talk to. No one to help me figure this out. Stress makes it worse. WooHoo!!!

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Sorry you haven't found much help from your doctors. I know that must be terribly frustrating. @wisgrama posted his success taking Dapsone in a post in this discussion in 2018 here https://connect.mayoclinic.org/comment/143775/. @wisgama saw a dermatologist at Mayo Rochester who provided a diagnosis of Lichen Planus and may be able to provide you with more details. Here's more information on Dapsone that you may want to discuss with your doctor.

"A patient with erosive lichen planus responded to therapy with dapsone after multiple therapeutic modalities had failed. The potential usefulness of..." -- Dapsone in the treatment of erosive lichen planus: https://pubmed.ncbi.nlm.nih.gov/3989015/

"Oral dapsone 200 mg daily for 16 weeks was tried on 52 adult patients, of whom 33 patients (males 17, femals 16) completed the study." --- Efficacy of Dapsone in Lichen Planus: https://pubmed.ncbi.nlm.nih.gov/28128157/

REPLY
Mentor
Becky, Volunteer Mentor | @becsbuddy | Nov 15, 2021
In reply to @mskatrina12 "No, it really hasn't helped, but I'll try anything! This has been going on for almost..." + (show)
@mskatrina12

No, it really hasn't helped, but I'll try anything! This has been going on for almost 2 years, but it was just recently diagnosed. In the beginning I was staying home, staying away from all Doctor & Dentist offices due to Covid, and then once I began to venture out all I got was "Try this & come back in a month." "Now try this & come back in a month." "Hmm...Wonder what it might be? Maybe I'll send you to Dr. XXX." Well, 2 months later I had an appointment with Dr. XXX, and they then called & rescheduled it, but in the mean time another Dr. had me on Prednisone for 2 months, which had all kinds of crazy side effects. Then Dr. XXX did tests, told me briefly what I had, (Erosive Oral Lichen Planus), DIDN'T tell me that there's no cure, (Yippee!), kept me on Prednisone for a 3rd month and added Mycophenolate, which has a whole new set of crazy side effects, (DO I REALLY WANT TO DO THIS???), I haven't been able to eat ANYTHING but vanilla ice cream for over 6 months, because it freezes my mouth so I don't feel the pain, and there's no nutrition in vanilla ice cream. They now have me drinking vanilla Ensure, which burns like fire, but I drink it anyway....I'm terrified of taking the Prednisone & Mycophenolate (couldn't possibly be a worse time to be suppressing a persons immune system -- I'm 70 years old and visit my 97 year old mother in a long term care facility once a week. I've had 2 Covid vaccs, but can't get the booster because of the immunosuppressive drugs...). I'm also scared to NOT take the drugs, because I've read that this disease often causes oral cancer, especially in those over 65, and quite often on the side of the tongue --- and the side of the tongue is where I have it the worst. My Dr. hasn't told me any of this stuff yet. She's a Dermatolagist, very young, and probably excited to have an exciting case like this to deal with -- I hope! I've only seen her twice, so far...another "do this, and I'll see you in a month". Do they realize that a month is THIRTY DAYS??? Anyway, the more I read about this whole thing, the more terrified I become. Do I take the drugs, let them suppress my immune system, let whatever is hiding inside of me or whatever I run into outside of me get ahold of me and finish me off........or do I NOT take the drugs, let the disease continue to destroy the inside of my mouth, possibly travel to the esophagus, nose, eyes, or maybe just cause cancer and get it over with sooner? No one to talk to. No one to help me figure this out. Stress makes it worse. WooHoo!!!

Jump to this post

@mskatrina12 I’m so glad @johnbishop was able to give you some good information. I don’t have erosive oral lichen planus but i do have another autoimmune disease that affects my brain. I take prednisone and Mycophenolate and I’m 73 yo. I know that they are immunosuppressants so i take care to protect myself. I always wear a mask when I’m out and I’m extra careful on airplanes (I’ve been to see my 98yo mother twice since covid started). Was your mother vaccinated? Talk to the staff at the care facility to find out the vaccination rates of the staff and patients. Also tell them that you are on these drugs so need to be very careful. Is your town and/or county controlling the pandemic? You need to quietly sit down and consider everything. Yes, the medications for you are very important, just like the vaccines are. Then you can wear your mask and safely visit your mom.
I was also encourage to get the booster shot and had no reactions. I know that you’re nervous as heck because i am, too. I’m able to talk with some friends and others, not. I’m sorry you don’t have friends who will listen .
@mskatrina12 , i know you can do this. It’s hard. I’m here whenever you want to talk.
P.S. as i was typing this, my phone timer went off telling me it was time to take Mycophenolate! Yes, there are side effects, but…..
Would getting a second opinion help you to feel better? Is there a university hospital that you could reach out to?

REPLY
1 reply
artist01 | @artist01 | Nov 16, 2021
In reply to @becsbuddy "@mskatrina12 I’m so glad @johnbishop was able to give you some good information. I don’t have..." + (show)
@becsbuddy

@mskatrina12 I’m so glad @johnbishop was able to give you some good information. I don’t have erosive oral lichen planus but i do have another autoimmune disease that affects my brain. I take prednisone and Mycophenolate and I’m 73 yo. I know that they are immunosuppressants so i take care to protect myself. I always wear a mask when I’m out and I’m extra careful on airplanes (I’ve been to see my 98yo mother twice since covid started). Was your mother vaccinated? Talk to the staff at the care facility to find out the vaccination rates of the staff and patients. Also tell them that you are on these drugs so need to be very careful. Is your town and/or county controlling the pandemic? You need to quietly sit down and consider everything. Yes, the medications for you are very important, just like the vaccines are. Then you can wear your mask and safely visit your mom.
I was also encourage to get the booster shot and had no reactions. I know that you’re nervous as heck because i am, too. I’m able to talk with some friends and others, not. I’m sorry you don’t have friends who will listen .
@mskatrina12 , i know you can do this. It’s hard. I’m here whenever you want to talk.
P.S. as i was typing this, my phone timer went off telling me it was time to take Mycophenolate! Yes, there are side effects, but…..
Would getting a second opinion help you to feel better? Is there a university hospital that you could reach out to?

Jump to this post

@mskatrina12 Hello. I was diagnosed with OLP a year ago and 3 or 4 doctors have tried several medications, with no success as yet. Currently, I'm in the care of a dermatologist who also has had me on several prescriptions with no success. He intends to do a biopsy soon, which I'm dreading, but am welcoming.
I also have Giant Cell Arteritis and have been on high doses of immunosuppressants including Prednisone and now Actemra injections in the care of my rheumatologist. On the advice and approval of my rheumatologist, I've had two Moderna vaccines and a booster, in spite of these iimmunosuppressants. I had no side effects from the booster shot, aside from the usual sore arm. My rheumatologist said it was much more important for me to have the three vaccines than to risk getting Covid. I trust my care and her opinions implicitly. (I have several autoimmune diseases, including GCA, OLP, IBS, as well as osteoarthritis, etc., etc.!) Hope this info might help allay your fears regarding getting the booster shot, Katrina. Warm regards, Laurie

REPLY
mskatrina12 | @mskatrina12 | Nov 16, 2021

Hi, Laurie -- Thanks for your response! I've heard so many different things about this crazy disease, and although I've had it for almost two years, it was just diagnosed within the past couple months. I've been reading a lot about it, and I'm so confused! Everything seems to say something different! It was a Dermatologist that diagnosed it, and I haven't seen her since then --- I have so many questions, and I don't see her again until December 8th. I guess they don't realize that each day can seem like an eternity at times.....The immunosuppressive drugs (Prednisone & Mycophenolate) don't seem to be doing anything except making me feel like a zombie! I'm dizzy, weak, shaky, I run into things, can't think straight, and I find myself staring at a door and trying to remember which hand I'm supposed to use to open it! WTF! Am I going crazy now, too??? I use Lidocaine Suspension twice a day for the pain, but the Lidocaine burns, and by the time it stops burning, the pain is back in full force! Is this what I have to look forward to for the rest of my life? If it is, thank God I'm already 70, but unfortunately we tend to live to a ripe old age -- Mom is 97! (Just my luck! LOL!) Oh, well.....I guess I'll just keep reading, and maybe I'll stumble upon a magic potion that someone has discovered! Good luck with all of your autoimmune diseases! (I guess if I only have ONE and I'm whining about it, I'm just being a wimp! LOL!) Have a good day! Katrina

REPLY
artist01 | @artist01 | Nov 17, 2021

@mskatrina12. Nooooo, you're not a wimp, Katrina. OLP is no joke. I know your frustration because I know so well how you are suffering. Me too, me too!
My doctors are very frustrated as well because nothing they've tried has worked. Like you, I'm forever researching online and taking notes on anything I haven't yet tried. I hope you'll tell your dermatologist of all the nasty side effects you're dealing with. You shouldn't have to put up with that kind of misery. The doc will likely cut you down, or off, those two meds and try something else.
You're just a young chick at 70. Please don't wish your life away. I'm 86, and despite everything, I'd like to live to at least 97 and then re-negotiate!! 🤣
Maybe my upcoming biopsy will reveal something new that will shed a light on this miserable condition. My mantra has always been "Under all this manure, there must be a PONY somewhere!"
My very best to you, Katrina.
Keep on truckin' !
❤ Laurie

REPLY
2 replies
mskatrina12 | @mskatrina12 | Nov 17, 2021
In reply to @artist01 "@mskatrina12. Nooooo, you're not a wimp, Katrina. OLP is no joke. I know your frustration because..." + (show)
@artist01

@mskatrina12. Nooooo, you're not a wimp, Katrina. OLP is no joke. I know your frustration because I know so well how you are suffering. Me too, me too!
My doctors are very frustrated as well because nothing they've tried has worked. Like you, I'm forever researching online and taking notes on anything I haven't yet tried. I hope you'll tell your dermatologist of all the nasty side effects you're dealing with. You shouldn't have to put up with that kind of misery. The doc will likely cut you down, or off, those two meds and try something else.
You're just a young chick at 70. Please don't wish your life away. I'm 86, and despite everything, I'd like to live to at least 97 and then re-negotiate!! 🤣
Maybe my upcoming biopsy will reveal something new that will shed a light on this miserable condition. My mantra has always been "Under all this manure, there must be a PONY somewhere!"
My very best to you, Katrina.
Keep on truckin' !
❤ Laurie

Jump to this post

Oh, Laurie, THANK YOU, THANK YOU, THANK YOU!!! You made me laugh between all the tears! I love you for that! I'll start looking for the PONY! LOL!
Thank you so much!
Katrina

REPLY
1 reply
artist01 | @artist01 | Nov 17, 2021
In reply to @mskatrina12 "Oh, Laurie, THANK YOU, THANK YOU, THANK YOU!!! You made me laugh between all the tears!..." + (show)
@mskatrina12

Oh, Laurie, THANK YOU, THANK YOU, THANK YOU!!! You made me laugh between all the tears! I love you for that! I'll start looking for the PONY! LOL!
Thank you so much!
Katrina

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@mskatrina12. Way to go, kid! Oh listen! ... I think I hear a far-off nay or whinney out there somewhere! By gosh, it's getting closer! Can you hear it too? 🤣 ☘

REPLY
1 reply
mskatrina12 | @mskatrina12 | Nov 17, 2021
In reply to @artist01 "@mskatrina12. Way to go, kid! Oh listen! ... I think I hear a far-off nay or..." + (show)
@artist01

@mskatrina12. Way to go, kid! Oh listen! ... I think I hear a far-off nay or whinney out there somewhere! By gosh, it's getting closer! Can you hear it too? 🤣 ☘

Jump to this post

LOL! I think I DO hear it! Gonna have to get a bigger manure shovel and dig deeper! You guys are great! Thank you!!!

REPLY
1 reply
artist01 | @artist01 | Nov 17, 2021
In reply to @mskatrina12 "LOL! I think I DO hear it! Gonna have to get a bigger manure shovel and..." + (show)
@mskatrina12

LOL! I think I DO hear it! Gonna have to get a bigger manure shovel and dig deeper! You guys are great! Thank you!!!

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@mskatrina12 . That's the spirit, Katrina! Good luck with your doc on December 8th.

REPLY
mskatrina12 | @mskatrina12 | Nov 17, 2021

Thanks! I've got a million questions --- I hope she has at least half a million answers, for starters, anyway! LOL!

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