1. < Autoimmune Diseases

Oral lichen Planus: What home remedies or medications help you?

Posted by lovebug61 @lovebug61, Apr 4, 2019

Anyone in the group suffer from Oral Lichen Planus. I am at my wits end with all these erosive sores in my mouth. I've had two biopsies , one in the inside cheek and one under the side of my tongue. The spot under the tongue is extremely sore to touch and has been for over a year. It scares me because the soreness never goes away, sometimes it isn't as sore but nothing helps. Any home remedies for this dreadful condition?

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Mentor
Becky, Volunteer Mentor | @becsbuddy | Oct 12, 2023
In reply to @leannestork "Hi there.... I was wondering as someone said this is what might be wrong with my..." + (show)
@leannestork

Hi there.... I was wondering as someone said this is what might be wrong with my mum for her very sore burning sensation tongue. However her B12 is not low ..... her Iron is low though. I am wondering if i am barking up the wrong tree here and if someone might be able to help me on this one

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@leannestork Hello, Leanne. How long has your mother had this feeling on her tongue? And has she seen her doctor about this? Several more questions: Is she on antibiotics? Has she accidentally bitten her tongue? Are there any white spots on the tongue?
Truly, your mother’s doctor is the best one to evaluate the sore. Will you call for an appointment tomorrow?

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1 reply
rashida | @rashida | Oct 13, 2023
In reply to @bebold "@spondee thank you. The thing people aren't realizing is if the inflammation from the vaccine makes..." + (show)
@bebold

@spondee thank you.
The thing people aren't realizing is if the inflammation from the vaccine makes pain in your body worse, the inflammation from covid is 100 times that. So skipping the vaccine but getting the illness is not the smartest idea. I'm glad you got the vaccine. I ended up with the long covid and an autoimmune pain condition I have called CRPS spread up to my hips. I was vaccinated thank gof as I had a mild case but I still ended up on cortisone for months. Suddenly I realized my OLP wasn't hurting. I had no sores. As soon as I went off of it they came right back of course but so did my CRPS nightmare. I decided the wean was too fast. So she put me back on five for a month and eventually down to two for a month and I didn't experience the discontinued cortisone flare. Its good to read about the gluten. I've been cutting down for pain reasons not really thinking about the fact that the OLP would improve. Duh. I just noticed I have no sores today. When in pain all the time and then it's gone for a day or 2, i kind of forget to notice. Chronic pain is odd.

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@bebold what is CRPS?

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rashida | @rashida | Oct 13, 2023
In reply to @fdixon63 "Hi @lindaadel. Where to start... I suffered with OLP for several years until I was finally..." + (show)
@fdixon63

Hi @lindaadel. Where to start... I suffered with OLP for several years until I was finally referred to a dental teaching facility and was diagnosed. At that time I was told "no known cause--no known cure." Was recommended different rinses which burned so badly that I could not use. Toothpaste always contained mint or something that burned. I finally began using baking soda and diluted hydrogen peroxide. Years later it exhibited in my vagina. Then I began getting places on arms, legs, face that developed into squamous cell cancer. (The doctors say there is no correlation but I'm not convinced. I go again this Wednesday for Mohs surgery # ?? I'm 78 and looks like this is my lot in life from now on. Wishing/praying there will be some research that can come up with something to help. One thing I'll throw out there. I've been going to the dentist every 4 months for 4-5 years, then in March this year I lost 3 natural teeth and two bridges. So, a total of 5 teeth in one week. They just broke off. No warning. Now, I had the two original covid vaccines in 2021, got covid in Sept. 2022 and was an inpatient for 8 days. Makes me wonder. I did get dental surgery and after 3 months got a partial. My gums look like pure blood they are so red. Thankfully the pain has gotten better but my concern is with such inflammation, what can it lead to? I'm sure I left something out but hope this experience will help some. Blessing. Faye

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@fdixon63 what is Mohs?

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fdixon63 | @fdixon63 | Oct 13, 2023

Hi @lilndaadel. This site describes Mohs far better than I could. Just click on the link. I have more to post since having my most recent surgery on Wednesday.
https://www.mayoclinic.org/tests-procedures/mohs-surgery/about/pac-20385222

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ktgirl | @ktgirl | Oct 14, 2023
In reply to @mctd43years "I have had OLP for many years. A dermatologist recommended Lyderm gel and it worked great..." + (show)
@mctd43years

I have had OLP for many years. A dermatologist recommended Lyderm gel and it worked great for me. She also suggested that I mix 50% liquid children's Benadryl and 50% liquid Gaviscon together and use it as a mouthwash two to three times a day, as needed. It was amazing. It calmed the pain and I didn't have to use the Lyderm gel so much. Do not swallow it, just rinse and spit it out. She also recommended that I use an electric round toothbrush and a water pic instead of floss, so as not to irritate the gum tissue. I hope this helps and keep smiling. It is always better when you smile.

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Thank you for these suggestions. I haven't written in on this yet but I'm in severe pain mostly afternoon into the evening. Hardly anything that I can eat anymore. I haven't seen a dermatologist yet but am scheduled to see an orthodontist in November. I'm definitely going to try the gaviscon and children's Benadryl. Thank you!

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jshdma | @jshdma | Oct 14, 2023

To anyone suffering from OLP. There is a government website (NIH?) that discusses treatments for OLP. According to that list, there are numerous treatments, starting with steroids. Steroids do work, but can't be used long-term. Most of the other treatments aim to tamp down / regulate the immune system, which is over-reacting to whatever is the cause. The problem is, however, that apparently most (or no) doctors know anything about these treatments. I have been to 6-7 experts in NYC and Boston. All of them offered no treatment, and certainly no cure.

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2 replies
Mentor
Becky, Volunteer Mentor | @becsbuddy | Oct 14, 2023
In reply to @jshdma "To anyone suffering from OLP. There is a government website (NIH?) that discusses treatments for OLP...." + (show)
@jshdma

To anyone suffering from OLP. There is a government website (NIH?) that discusses treatments for OLP. According to that list, there are numerous treatments, starting with steroids. Steroids do work, but can't be used long-term. Most of the other treatments aim to tamp down / regulate the immune system, which is over-reacting to whatever is the cause. The problem is, however, that apparently most (or no) doctors know anything about these treatments. I have been to 6-7 experts in NYC and Boston. All of them offered no treatment, and certainly no cure.

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@jshdma it is so true about doctors knowing nothing about all the diseases and treatments. When I first got my autoimmune disease and even now, I carry an article describing the disease to the doctor. I have found it good to educate them!
Try it!

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1 reply
maddiemae | @maddiemae | Oct 15, 2023
In reply to @becsbuddy "@jshdma it is so true about doctors knowing nothing about all the diseases and treatments. When..." + (show)
@becsbuddy

@jshdma it is so true about doctors knowing nothing about all the diseases and treatments. When I first got my autoimmune disease and even now, I carry an article describing the disease to the doctor. I have found it good to educate them!
Try it!

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You are so right that a lot of docs don't know about dysautonomia or central pain syndrome. After 7 specialists and several visits with my pcp I found great neurologists who determined both of these issues. Even with meds ( no cure for cps) and anti-inflammatory diet I still have chronic problems.
Wishes for relief.

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1 reply
fdixon63 | @fdixon63 | Oct 15, 2023
In reply to @jshdma "To anyone suffering from OLP. There is a government website (NIH?) that discusses treatments for OLP...." + (show)
@jshdma

To anyone suffering from OLP. There is a government website (NIH?) that discusses treatments for OLP. According to that list, there are numerous treatments, starting with steroids. Steroids do work, but can't be used long-term. Most of the other treatments aim to tamp down / regulate the immune system, which is over-reacting to whatever is the cause. The problem is, however, that apparently most (or no) doctors know anything about these treatments. I have been to 6-7 experts in NYC and Boston. All of them offered no treatment, and certainly no cure.

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@jshdma. I've been to three dermatologist who use the generic statement regarding LP, "we don't know what causes it and there is no treatment." It's hard to accept that when we suffer. Just this past week I had another Mohs surgery. This one was on my right leg. I've had OLP plus numerous squamous cancers requiring Mohs on both legs and both arms. Since this surgery was with a new dermatology doc I again asked my standard question, "Is there and connection between LP and squamous cancer?" This doc said, yes, generally. Boy did he have my attention. He talked about medicines called Jak inhibitors. He said it is usually used to treat rheumatoid arthritis but he has used it to treat LP "with good results." I will be doing research this week and then contacting my dermatologist locally to see if it is something I can try. Hoping this information can help others. Blessings.

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1 reply
jshdma | @jshdma | Oct 15, 2023
In reply to @fdixon63 "@jshdma. I've been to three dermatologist who use the generic statement regarding LP, "we don't know..." + (show)
@fdixon63

@jshdma. I've been to three dermatologist who use the generic statement regarding LP, "we don't know what causes it and there is no treatment." It's hard to accept that when we suffer. Just this past week I had another Mohs surgery. This one was on my right leg. I've had OLP plus numerous squamous cancers requiring Mohs on both legs and both arms. Since this surgery was with a new dermatology doc I again asked my standard question, "Is there and connection between LP and squamous cancer?" This doc said, yes, generally. Boy did he have my attention. He talked about medicines called Jak inhibitors. He said it is usually used to treat rheumatoid arthritis but he has used it to treat LP "with good results." I will be doing research this week and then contacting my dermatologist locally to see if it is something I can try. Hoping this information can help others. Blessings.

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@fdixon63 Another answer you get from docs regarding OLP is that "I doesn't look that bad." In fact it IS that bad, regardless of what they say. BTW. in my case, the vaccine made OLP much, much worse. This stands to reason, because the VAX works (or not) by ramping up the immune system. OLP is an immune response. No one with OLP should get near that VAX. About squamous cell cancer, I think that refers to the fact that OLP can turn to cancer (in the mouth). Fortunately this is rare.

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