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.

Interested in more discussions like this? Go to the Autoimmune Diseases group.

@johnbishop

Hello @suyadugs, welcome to Connect. I'm tagging our moderator @ethanmcconkey to see if we can move your post to the following existing discussion on lichen planus where it will have more visibility.

> Groups > Autoimmune Diseases > Lichen planus
https://connect.mayoclinic.org/discussion/lichen-planus-2da636/

Has your doctor given you any suggestions for diet or lifestyle changes?

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Thank you so much John…really nice of you..actually it's my husband who has LP since last 15 months..Has tried all medicines by his doctor yet his whole body is covered in rash still…is yet to try phototherapy for which he is waiting…will love to hear from someone who has overcome this very nagging & frustrating disease.Yes…his do tor has told him about some meds.& food to avoid!

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@ethanmcconkey

Hy @suyadugs 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 with similar experience. Simply click VIEW & REPLY in your email notification to find your post.

What medication were you prescribed?

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Thank you so much …it's my husband who has LP…He is under care of dermatology consultant…Has been prescribed all kinds of medicines & lotions in past 25 months without any result…very frustrating…Has yet to try photo therapy…has started making changes in f his diet lately hope it helps…was w/o daring anybody has got some advice on skin LP.

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@suyadugs

Thank you so much …it's my husband who has LP…He is under care of dermatology consultant…Has been prescribed all kinds of medicines & lotions in past 25 months without any result…very frustrating…Has yet to try photo therapy…has started making changes in f his diet lately hope it helps…was w/o daring anybody has got some advice on skin LP.

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Correct…was wondering!

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Sounds like you have Lichen Planus of the skin. If your surgeon cannot help you ( and he certainly should try) try your primary doctor. If not Perhaps a skin doctor ( dermatologist) As for you mouth.. apparently you may have Oral Lichen , I have had both as well. The oral Lichen Planus I have is still bugging me and of course has flares that is very painful. I know how you feel. I have been seeing a Dental Pathologist at a nearby college. She has been helping me to relieve some of the pain and redness. I am taking a gel called Fluocinomide 0.5% gel and I use it 2 x s day. I also have Lozenges called Clotrimazole 10MG which I let melt in my mouth 4 xs a day. I use only Biotene Toothpaste ( gentle mint only it has a green bottom) I would advice you to see your immediate doctors or write to WEB MD on the net. There is a group called Oral Lichen Planus. I wish I could help you more. I can only say a prayer for your suffering. As we all do. OLP does not go away anytime soon. It will come and go perhaps with flares,. Do be careful what you eat and keep a diary of what bothers you most. I find spicy, overly hot, like soup. coffee too hot. A lot of fruits I love I cannot eat anymore. Good luck and blessing coming your way. Hang in there. It can get better.

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I am almost 76 y.o. I have been diagnosed with lichen plantus. It started on the right leg and is now affecting my left leg and scalp. The itching is almost unbearable. I am open for any suggestions on how to control or even heal this skin disorder. I have been seeing a dermatologist but nothing seems to work. I am taking doxycycline and using a cream to stop the itching. No positive results. Thank you in advance for any advise you may provide me.

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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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@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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@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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@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

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

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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

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@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

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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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@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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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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