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.

Liked by firelady

My mom has it, and yes autoimmune diseases can be hereditary. My mom has oral lichens planus. She uses “Magic Mouthwash” which is prescribed and made special for her. It has hydrocortisone for Inflammation, lidocaine for pain (numbs) and something else in it. She uses only natural tooth pastes- regular ones are too harsh. Tom’s of Maine is a good one, otherwise she is currently using a Biotene toothpaste I think. She gets the absolute softest toothbrushes she can find. Uses reach gentle care dental floss. And has found a dentist that knows what it is and knows how painful it is and to be careful. She has to go in every 4 months instead of 6 for cleanings because her gums cannot handle any plaque buildup.
Bottom line- when she is stressed her lichens planus is terrible. She has learned to manage her stress to keep it to a minimum. It takes a long time for her sores to heal.
She also has a dermatologist she sees that knows how to treat it.

Liked by firelady

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Oh,
she avoids any mouthwashes- especially those with alcohol. And doesn’t eat hard crackers or chips that will irritate her mouth

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Thanks mouser I am using the magic mouthwash , it does help a little. Be kind to your mom, she is in a lot of pain, a lot more than she can probably explain to you. This disease is horrible.

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@firelady

Thanks mouser I am using the magic mouthwash , it does help a little. Be kind to your mom, she is in a lot of pain, a lot more than she can probably explain to you. This disease is horrible.

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Yes, thanks, I will. Best of luck to you

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@mouser

My mom has it, and yes autoimmune diseases can be hereditary. My mom has oral lichens planus. She uses “Magic Mouthwash” which is prescribed and made special for her. It has hydrocortisone for Inflammation, lidocaine for pain (numbs) and something else in it. She uses only natural tooth pastes- regular ones are too harsh. Tom’s of Maine is a good one, otherwise she is currently using a Biotene toothpaste I think. She gets the absolute softest toothbrushes she can find. Uses reach gentle care dental floss. And has found a dentist that knows what it is and knows how painful it is and to be careful. She has to go in every 4 months instead of 6 for cleanings because her gums cannot handle any plaque buildup.
Bottom line- when she is stressed her lichens planus is terrible. She has learned to manage her stress to keep it to a minimum. It takes a long time for her sores to heal.
She also has a dermatologist she sees that knows how to treat it.

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Hello, mo

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Hello, mouser…thx for the info re Biotene and Tom’s of Maine toothpastes…I have PMR and am now trying to get rid of a mouth problem…looks a bit like LP…calling dentist tmo…using Nystatin and Amosan, but neither are working. Your info is helpful as I use Biotene mouth sprays. Sure hope it isn’t LP. These auto immune diseases are awful!!

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I have oral lichen planus for over 10 years. My dentist gives me a steroid gel to put on it when it's bad but I did some research and started making my own toothpaste. I have not had a flair up in over 3 years. I mix equal parts(one tablespoon) baking soda and coconut oil and several drops of Act flouride to make my dentist happy. It takes some getting used to but after a while it won't bother you. You can also add organic peppermint oil from a health food store to it if you like the minty taste. Google it. There are many variations out there but it has helped me tremendously. I also mentioned having my teeth pulled but my dentist said it would not help as it would still affect your gums and inside cheeks. Hope this helps.

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@suyadugs

Persistent red bumps on the entire body & scalp..no relief from any medication prescribed up til now… any lifestyle changes to be done…is food responsible for it?Has anybody got any advice on this?

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Sorry to hear about your fight with LP is a fight. I have had LP for 30+ years. It has been quite a ride with not change in the strategy for treatment. I find that I must work out regularly at least 5 times a week. I think it helps with stress and better blood flow for healing. I will no longer take and aural Prednisone. I use only the topical cortisone in gel or ointment form. In March I was told to eliminate all dairy ( it is the protein in the dairy from cow, goat, and sheep that causes the problem for me. All oozy, crusty burning caused in the bumps on my body. Even some improvement in my mouth. Because it is an autoimmune disease, it is so hard to find what our personal triggers are that make our body react. I also only use non soap to bath and wash with so that I don’t strip my body of the natural oils.It has all helped. My mouth is the challenge with Errosive LP. A painful proposition, but keep a close eye on it as it can develop into cancer. My best luck has been with Teaching Hospitals in the Oral Medicine or stomatology departments, or with Dermatology Docs. Best of luck. maryz

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@suyadugs

Persistent red bumps on the entire body & scalp..no relief from any medication prescribed up til now… any lifestyle changes to be done…is food responsible for it?Has anybody got any advice on this?

Jump to this post

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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Persistent red bumps on the entire body & scalp..no relief from any medication prescribed up til now… any lifestyle changes to be done…is food responsible for it?Has anybody got any advice on this?

REPLY
@mouser

My mom has it, and yes autoimmune diseases can be hereditary. My mom has oral lichens planus. She uses “Magic Mouthwash” which is prescribed and made special for her. It has hydrocortisone for Inflammation, lidocaine for pain (numbs) and something else in it. She uses only natural tooth pastes- regular ones are too harsh. Tom’s of Maine is a good one, otherwise she is currently using a Biotene toothpaste I think. She gets the absolute softest toothbrushes she can find. Uses reach gentle care dental floss. And has found a dentist that knows what it is and knows how painful it is and to be careful. She has to go in every 4 months instead of 6 for cleanings because her gums cannot handle any plaque buildup.
Bottom line- when she is stressed her lichens planus is terrible. She has learned to manage her stress to keep it to a minimum. It takes a long time for her sores to heal.
She also has a dermatologist she sees that knows how to treat it.

Jump to this post

I absolutely agree that getting my teeth cleaned quarterly it helps. I also a brush, floss, and rinse and use the little picks…it helps too. With my mouth sores I cannot tolerate any mint. Sometimes use children’s toothpaste without mint. My mother and sister have been biopsied and have oral LP too. Theirs is/was not active. I have had to have prednisone shots on the inside of each cheek when it affects my ability to eat anything. 35 years fighting the disease. It is terrified to have this format. I am going to try magic mouthwash? Thank you! Maryz

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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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@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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