1. < Autoimmune Diseases

Lichen planus

Posted by firelady @firelady, Sep 2, 2012

I was diagnosed about two yrs ago with lichen planus an auto imune disease they say it is very rare and not contagious yet my younger brother has it also. I have the skin lichen planus as well as oral lichen planus which affects my gums, cheeks, and tongue. It is very , very painful. I had a very large back surgery in April and I got lichen planus sores on my back as a result of the trauma from surgery my incision that is twenty inches long healed but my sores from lichen planus are still open. I don't know how to get them to heal and right now I have just developed an outbreak in my mouth. The pain is so deep in the nerves that I feel like my teeth are going to explode and I can feel my pulse under my teeth. I can't explain the pain and I am begging for someone to tell me if they found anything that helps with the pain. Also I never heard of lichen planus , what can I expect from this disease? How often will I have outbreaks? will it ever go away? Should I have my teeth pulled out or will dentures make it even worse? Not too many doctors seem to know much if anything about this auto imune disease.

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navyblue14 | @navyblue14 | Feb 9, 2020
In reply to @becsbuddy "@navyblue14 Good morning. I’m so sorry you’re having these skin problems. There is just nothing worse!..." + (show)
@becsbuddy

@navyblue14
Good morning. I’m so sorry you’re having these skin problems. There is just nothing worse! I don’t think I had lichen Planus but I know I had some major skin irritations. What I learned was to eliminate all Products with fragrances . Even laundry soap. It took a little while, but it has worked. I just don’t know why manufacturers think that everything has to have fragrance! Best of luck

Jump to this post

Thank you!

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Mentor
Becky, Volunteer Mentor | @becsbuddy | Feb 4, 2020
In reply to @navyblue14 "Diagnosed 2 years ago. I am 42. I really did not get a complete understanding of..." + (show)
@navyblue14

Diagnosed 2 years ago. I am 42. I really did not get a complete understanding of it. I'm perfectly healthy. I did a biopsy on leg when it was first spotted. I am now having a outbreak on the fore arm, legs, around ankles, too of my foot. In to make it all bad I'm light skin in the scarring is horrible. Do any of you have suggestion on soap to use? Does certain kind flare it up? I read on things that can flare it like ibuprofen, Advil, metal fillings. I mean it just came out the blue. I have used steroid cream for 14 days it's still there n ik that can cause thinking of skin for long periods of using. Does any one know if folic acid pills make it better

Jump to this post

@navyblue14
Good morning. I’m so sorry you’re having these skin problems. There is just nothing worse! I don’t think I had lichen Planus but I know I had some major skin irritations. What I learned was to eliminate all Products with fragrances . Even laundry soap. It took a little while, but it has worked. I just don’t know why manufacturers think that everything has to have fragrance! Best of luck

REPLY
1 reply
navyblue14 | @navyblue14 | Feb 4, 2020
In reply to @lisalucier "Hello, @navyblue - welcome to Mayo Clinic Connect. The scarring you are talking about would distress..." + (show)
@lisalucier

Hello, @navyblue - welcome to Mayo Clinic Connect. The scarring you are talking about would distress me, too.

I have moved your post here to this discussion on lichen planus (LS) so you can talk with others in this existing discussion on this condition about your questions such as the kind of soap to use and whether any particular kinds of soap or other factors can flare up the lichen planus. They may also have some thoughts to share on whether folic acid pills are helpful. Please meet @becsbuddy @jlclaussen @grammlyn @dreamer38 and others here.

Have you noticed anything so far that seems to make your LS flare up?

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This is my second flare up. The first time I noticed was during nursing school, n now its just stress

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navyblue14 | @navyblue14 | Feb 4, 2020

This my second flare up. Any suggestions.

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navyblue14 | @navyblue14 | Feb 4, 2020
In reply to @lisalucier "Hello, @navyblue - welcome to Mayo Clinic Connect. The scarring you are talking about would distress..." + (show)
@lisalucier

Hello, @navyblue - welcome to Mayo Clinic Connect. The scarring you are talking about would distress me, too.

I have moved your post here to this discussion on lichen planus (LS) so you can talk with others in this existing discussion on this condition about your questions such as the kind of soap to use and whether any particular kinds of soap or other factors can flare up the lichen planus. They may also have some thoughts to share on whether folic acid pills are helpful. Please meet @becsbuddy @jlclaussen @grammlyn @dreamer38 and others here.

Have you noticed anything so far that seems to make your LS flare up?

Jump to this post

I have been very stressed. I have seen where it says it is not due to stress but emotional stress can trigger it

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Moderator
Lisa Lucier, Moderator | @lisalucier | Feb 3, 2020
In reply to @navyblue14 "Diagnosed 2 years ago. I am 42. I really did not get a complete understanding of..." + (show)
@navyblue14

Diagnosed 2 years ago. I am 42. I really did not get a complete understanding of it. I'm perfectly healthy. I did a biopsy on leg when it was first spotted. I am now having a outbreak on the fore arm, legs, around ankles, too of my foot. In to make it all bad I'm light skin in the scarring is horrible. Do any of you have suggestion on soap to use? Does certain kind flare it up? I read on things that can flare it like ibuprofen, Advil, metal fillings. I mean it just came out the blue. I have used steroid cream for 14 days it's still there n ik that can cause thinking of skin for long periods of using. Does any one know if folic acid pills make it better

Jump to this post

Hello, @navyblue - welcome to Mayo Clinic Connect. The scarring you are talking about would distress me, too.

I have moved your post here to this discussion on lichen planus (LS) so you can talk with others in this existing discussion on this condition about your questions such as the kind of soap to use and whether any particular kinds of soap or other factors can flare up the lichen planus. They may also have some thoughts to share on whether folic acid pills are helpful. Please meet @becsbuddy @jlclaussen @grammlyn @dreamer38 and others here.

Have you noticed anything so far that seems to make your LS flare up?

REPLY
2 replies
navyblue14 | @navyblue14 | Feb 2, 2020

Diagnosed 2 years ago. I am 42. I really did not get a complete understanding of it. I'm perfectly healthy. I did a biopsy on leg when it was first spotted. I am now having a outbreak on the fore arm, legs, around ankles, too of my foot. In to make it all bad I'm light skin in the scarring is horrible. Do any of you have suggestion on soap to use? Does certain kind flare it up? I read on things that can flare it like ibuprofen, Advil, metal fillings. I mean it just came out the blue. I have used steroid cream for 14 days it's still there n ik that can cause thinking of skin for long periods of using. Does any one know if folic acid pills make it better

REPLY
4 replies
navyblue14 | @navyblue14 | Feb 2, 2020
In reply to @navyblue14 "Diagnosed 2 years ago. I am 42. I really did not get a complete understanding of..." + (show)
@navyblue14

Diagnosed 2 years ago. I am 42. I really did not get a complete understanding of it. I'm perfectly healthy. I did a biopsy on leg when it was first spotted. I am now having a outbreak on the fore arm, legs, around ankles, too of my foot. In to make it all bad I'm light skin in the scarring is horrible. Do any of you have suggestion on soap to use? Does certain kind flare it up? I read on things that can flare it like ibuprofen, Advil, metal fillings. I mean it just came out the blue. I have used steroid cream for 14 days it's still there n ik that can cause thinking of skin for long periods of using. Does any one know if folic acid pills make it better

Jump to this post

Oh also if I use Tumeric I do i use it in food or liquid

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Mentor
Becky, Volunteer Mentor | @becsbuddy | Jan 21, 2020

@sausalito Hello, you sent me a private message which I’m going to answer here. Welcome to MayoClinicConnect. I’m glad you found us. We’re a community that shares health experiences and give support and information on what has worked/not worked for us. You said that you’ve been on topical steroids for 9 years for oral and vaginal lichen Planus but it’s no longer working. The doctor now suggests prednisone, but you’ve been unable to handle it. I hope that other members can chime in with suggestions on what’s worked for them. @maryz @grammlyn @jsbdma, do you have any tips? There is also a short radio program where a Mayo Clinic doctor discusses oral lichen Planus. https://newsnetwork.mayoclinic.org/discussion/treating-oral-lichen-Planus I certainly hope we can help because it sounds miserable.

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jlclaussen | @jlclaussen | Jan 2, 2020
In reply to @ethanmcconkey "Hi @jlclaussen and welcome to Connect. You may have noticed I moved your post to this..." + (show)
@ethanmcconkey

Hi @jlclaussen and welcome to Connect. You may have noticed I moved your post to this existing discussion on lichen planus so that you can connect with others who have similar experiences. Simply click VIEW AND REPLY in your email notification to get to your post.

That must be unbearable and frustrating to be unable to find a solution to the skin disorder.

@grammlyn @maryz and @suyadugs all have mentioned lichen planus in the past and may be able to offer you support.

Back to you @jlclaussen I see that you are using doxycycline and a cream for the itching. What other treatments have you tried? Have you thought about consulting another dermatologist to see if there is a different treatment you could try?

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Thanks a lot for your response. I have seen two doctors and think I may
go to Oregon Health Science University for a 3rd opinion. I am getting
desperate. Thanks again for your help.
Judy

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