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 | Aug 4, 2021
In reply to @maryz "It has been a while since my last post. I Live in Arizona and found two..." + (show)
@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.

Jump to this post

I am so glad to hear from you @maryz ! And the treatment sounds like it is perfect for you. How did you find a doctor who would treat you after all these years?

REPLY
1 reply
jkh7 | @jkh7 | Aug 5, 2021

Hello, I just joined this site and I also have erosive Oral Lichen Planus for the last 3 years. I have seen Dermatologists and Drs, and not one of them have been able to help me out. If anyone has any suggestions to help, I would greatly appreciate it. Thank you.

REPLY
1 reply
artist01 | @artist01 | Aug 5, 2021
In reply to @becsbuddy "I am so glad to hear from you @maryz ! And the treatment sounds like it..." + (show)
@becsbuddy

I am so glad to hear from you @maryz ! And the treatment sounds like it is perfect for you. How did you find a doctor who would treat you after all these years?

Jump to this post

@becsbuddy and @maryz. Mary, I'm so happy you've finally found some treatment that works for you!
I've suffered with OLP since December so can certainly empathize with the pain and difficulty eating (and talking too). Like you, after many doctors and many treatments, I've found a wonderful dermatologist who firstly treated it with Clobetasol four times a day and then elevated to six times a day. When that treatment failed, he prescribed Protopic (tacrolimus ointment 0.1%) and Voila! Success! The pain has subsided and the larger lesions on the side of my tongue are beginning to shrink. I'm so relieved. It's been a miserable time lately, with severe IBS and a recent heart attack. Wishing you much continued luck in your journey toward healing. Warmly, Laurie

REPLY
1 reply
Mentor
Becky, Volunteer Mentor | @becsbuddy | Aug 5, 2021
In reply to @jkh7 "Hello, I just joined this site and I also have erosive Oral Lichen Planus for the..." + (show)
@jkh7

Hello, I just joined this site and I also have erosive Oral Lichen Planus for the last 3 years. I have seen Dermatologists and Drs, and not one of them have been able to help me out. If anyone has any suggestions to help, I would greatly appreciate it. Thank you.

Jump to this post

Hello @jkh7 I’m so glad you found this discussion. OLP is certainly no joke to those who suffer from it. Please see @maryz ’s post from July 28. She had some good luck finally. Let’s hope that she’ll return to the conversation.
https://connect.mayoclinic.org/comment/620861/
What have you tried so far?

REPLY
3 replies
Mentor
Becky, Volunteer Mentor | @becsbuddy | Aug 5, 2021
In reply to @becsbuddy "Hello @jkh7 I’m so glad you found this discussion. OLP is certainly no joke to those..." + (show)
@becsbuddy

Hello @jkh7 I’m so glad you found this discussion. OLP is certainly no joke to those who suffer from it. Please see @maryz ’s post from July 28. She had some good luck finally. Let’s hope that she’ll return to the conversation.
https://connect.mayoclinic.org/comment/620861/
What have you tried so far?

Jump to this post

@jkh7 Here is another discussion you might check out. I believe it also has suggestions for you

Oral lichen Planus https://connect.mayoclinic.org/discussion/oral-lichen-planus-3/

REPLY
bustrbrwn22 | @bustrbrwn22 | Aug 5, 2021
In reply to @artist01 "@becsbuddy and @maryz. Mary, I'm so happy you've finally found some treatment that works for you!..." + (show)
@artist01

@becsbuddy and @maryz. Mary, I'm so happy you've finally found some treatment that works for you!
I've suffered with OLP since December so can certainly empathize with the pain and difficulty eating (and talking too). Like you, after many doctors and many treatments, I've found a wonderful dermatologist who firstly treated it with Clobetasol four times a day and then elevated to six times a day. When that treatment failed, he prescribed Protopic (tacrolimus ointment 0.1%) and Voila! Success! The pain has subsided and the larger lesions on the side of my tongue are beginning to shrink. I'm so relieved. It's been a miserable time lately, with severe IBS and a recent heart attack. Wishing you much continued luck in your journey toward healing. Warmly, Laurie

Jump to this post

Your positivity is an inspiration

REPLY
1 reply
artist01 | @artist01 | Aug 5, 2021
In reply to @bustrbrwn22 "Your positivity is an inspiration" + (show)
@bustrbrwn22

Your positivity is an inspiration

Jump to this post

Thankyou, @bustrbrwn22 ! I so appreciate your comment!

REPLY
jkh7 | @jkh7 | Aug 5, 2021
In reply to @becsbuddy "Hello @jkh7 I’m so glad you found this discussion. OLP is certainly no joke to those..." + (show)
@becsbuddy

Hello @jkh7 I’m so glad you found this discussion. OLP is certainly no joke to those who suffer from it. Please see @maryz ’s post from July 28. She had some good luck finally. Let’s hope that she’ll return to the conversation.
https://connect.mayoclinic.org/comment/620861/
What have you tried so far?

Jump to this post

Hello, my Dermatologist had me on Clobetasol and Protopic for a year and a half and then said that I had been on it too long and then sent me on my way. A couple of months later I saw an Oral Pathologist and she put me back on Protopic and then she retired. I just recently am seeing a new Dermatologist and she said to go back on the Protopic when I have a flare and use George's Aloe Vera to rinse in between. I am a little nervous about using the Protopic. I tried for a month to put Tumeric paste on one side of the gums, but didn't help at all. That is about all I have tried. Thanks for messaging back. Judy.

REPLY
jkh7 | @jkh7 | Aug 5, 2021
In reply to @maryz "It has been a while since my last post. I Live in Arizona and found two..." + (show)
@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.

Jump to this post

Thank you to whoever sent Mary's post of July 28th. I live in Canada and I have never heard of micro Cortisone shots. Thanks for all the hints to everyone. Not sure why, but I seem to lose messages that people have sent on this site. Sorry that I did not reply back. It just makes me feel better in a way to know other people are out there with similar problems. Thanks again, Judy.

REPLY
jkh7 | @jkh7 | Aug 5, 2021
In reply to @becsbuddy "Hello @jkh7 I’m so glad you found this discussion. OLP is certainly no joke to those..." + (show)
@becsbuddy

Hello @jkh7 I’m so glad you found this discussion. OLP is certainly no joke to those who suffer from it. Please see @maryz ’s post from July 28. She had some good luck finally. Let’s hope that she’ll return to the conversation.
https://connect.mayoclinic.org/comment/620861/
What have you tried so far?

Jump to this post

Hello Becky, I just found your message. Thank you so much for your help. I read Mary's post from July 28th and the Mayo Clinic connect post also. I have copied it and going to show it to my Dermatologist who I will be seeing again in September about having trays with the Clobetasol gel in them. Would be so good to do that when there is a flare. I sure appreciate your help. All the best, Judy.

REPLY
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