Oral lichen Planus

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?

Hello, everyone,
I am new to Lichen planus. About a year or so ago, my dentist commented on my gums that they were so red that this must be lichen planus, but he thought it weird that only areas of my gums were "fire engine" red! He said to watch it for a few weeks and call back if still red-I called back and I am not certain the message was relayed to him. I was not in discomfort so I let it go-had never heard of lichen planus, so on with life!
My next dentist appointment, he was alarmed that my gums looked so inflamed and gums recessed. I was sent to a periodontist who cleaned the roots of all my teeth and I am set up to have my teeth cleaned every 3 months alternating between the dentist and periodontist. He did a biopsy which confirmed erosive lichen planus and referred me to a specialist. Now I am alarmed-they were all so empathetic at the periodontist encouraging me that the gum tissue had improved after the root cleaning and I was feeling more positive!
My appointment with the specialist left me numb! He's a dermatologist and dentist. He looked at my mouth and said that it "was a mess"!
"We'll have to treat this aggressively"! So began clobetasol and minocycline daily and I ended up with oral thrush!!! They backed off the clobetasol to every other day. At three months, he was pleased with the results and removed the minocycline and added an "anti-rejection" medicine rinse. He checked and said I also have it vaginally! I am using another cream there.
My tongue often feels like it's been scraped. My husband and I had been going through a rough patch, but had just begun to iron things out and wanted to return to intimacy but the pain is incredible!
I am looking for advice, empathy, a place to share and find answers. I am frightened as this increases the chance of squamous cell carcinoma and I have had two spots removed elsewhere prior to the LP.
Thank you for any help
microgirl

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@microgirl

Hello, everyone,
I am new to Lichen planus. About a year or so ago, my dentist commented on my gums that they were so red that this must be lichen planus, but he thought it weird that only areas of my gums were "fire engine" red! He said to watch it for a few weeks and call back if still red-I called back and I am not certain the message was relayed to him. I was not in discomfort so I let it go-had never heard of lichen planus, so on with life!
My next dentist appointment, he was alarmed that my gums looked so inflamed and gums recessed. I was sent to a periodontist who cleaned the roots of all my teeth and I am set up to have my teeth cleaned every 3 months alternating between the dentist and periodontist. He did a biopsy which confirmed erosive lichen planus and referred me to a specialist. Now I am alarmed-they were all so empathetic at the periodontist encouraging me that the gum tissue had improved after the root cleaning and I was feeling more positive!
My appointment with the specialist left me numb! He's a dermatologist and dentist. He looked at my mouth and said that it "was a mess"!
"We'll have to treat this aggressively"! So began clobetasol and minocycline daily and I ended up with oral thrush!!! They backed off the clobetasol to every other day. At three months, he was pleased with the results and removed the minocycline and added an "anti-rejection" medicine rinse. He checked and said I also have it vaginally! I am using another cream there.
My tongue often feels like it's been scraped. My husband and I had been going through a rough patch, but had just begun to iron things out and wanted to return to intimacy but the pain is incredible!
I am looking for advice, empathy, a place to share and find answers. I am frightened as this increases the chance of squamous cell carcinoma and I have had two spots removed elsewhere prior to the LP.
Thank you for any help
microgirl

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Hello @microgirl, Welcome to Mayo Clinic Connect. I read a post earlier in this discussion where @orangealert mentioned that mouthwashes and toothpaste containing sodium lauryl sulfate (SLS) can often make the symptoms worse. I don't have oral lichen planus but used to have a lot of canker sores frequently and switched to a toothpaste that does not contains SLS and it has helped me. @artist01 @rashida and other member may also have suggestions.

You mentioned the appointment with the specialist not going very well. Have you thought about a second opinion at a major teaching hospital or health facility like Mayo Clinic?

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@johnbishop

Hello @microgirl, Welcome to Mayo Clinic Connect. I read a post earlier in this discussion where @orangealert mentioned that mouthwashes and toothpaste containing sodium lauryl sulfate (SLS) can often make the symptoms worse. I don't have oral lichen planus but used to have a lot of canker sores frequently and switched to a toothpaste that does not contains SLS and it has helped me. @artist01 @rashida and other member may also have suggestions.

You mentioned the appointment with the specialist not going very well. Have you thought about a second opinion at a major teaching hospital or health facility like Mayo Clinic?

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Hi John,
Thank you. I am currently using toothpaste and mouthwash specifically for sensitive gums, but I do need to check to make certain they do not contain SLS. I ordered auto-immune support lozenges this morning containing echinacea, zinc and vitamine C, which was suggested by someone.
The specialist seems very informative and he was pleased with the results so far, but I would like to get to ground zero as to why this is happening and see if I can remove the stimulus from my life rather than just treating the symptoms which is what I believe we are doing.
The second opinion may be a good direction. Thank you

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@microgirl

Hi John,
Thank you. I am currently using toothpaste and mouthwash specifically for sensitive gums, but I do need to check to make certain they do not contain SLS. I ordered auto-immune support lozenges this morning containing echinacea, zinc and vitamine C, which was suggested by someone.
The specialist seems very informative and he was pleased with the results so far, but I would like to get to ground zero as to why this is happening and see if I can remove the stimulus from my life rather than just treating the symptoms which is what I believe we are doing.
The second opinion may be a good direction. Thank you

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@microgirl I got OLP 6 years ago. All my research leads me to believe that there are no treatments that work. It can go away spontaneously, but not always. In my case it seemed to become a version of "burning mouth syndrome," which also has no treatments. I have seen top specialists in NYS and Boston. Steroids do work, but they can create other problems. including causing it to return even worse than it started. There are numerous articles on OLP in a government website on orpahan diseases.

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@maryz

I have lichen Planus Orally, in the genitalia , and on my skin. Some form of anti inflammatory is regularly prescribed! There is no cure but you cam maintain a reasonably pain free life if you don’t let the lesions overwhelm you. I see 3 different Dr’s as they each treat a different body part. But I am reasonably pain free and am able to eat. Best of luck. My Gynecologist refereed to LP as the Trifecta. I have had the disease for about 37years. The treatment is much better now! Foods that aggravate my symptoms are: Any small amount of dairy, any nuts, acid foods and alcohol. Best of luck!

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Hi-recently diagnosed-oral and vaginal. I am doing a steroid gel and a swish with an anti-rejection liquid. I am getting overwhelmed. I am so obsessed with checking my mouth! Some days everything looks somewhat normal and then I will look later in the day and my gums are red and my tongue looks swollen and scraped!

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@microgirl

Hi-recently diagnosed-oral and vaginal. I am doing a steroid gel and a swish with an anti-rejection liquid. I am getting overwhelmed. I am so obsessed with checking my mouth! Some days everything looks somewhat normal and then I will look later in the day and my gums are red and my tongue looks swollen and scraped!

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Good evening @microgirl OLP must be so difficult to deal with. I don’t have it but I had awful mouth sores when I started steroids. This link may give you some more information.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3961895/
Do certain foods cause more trouble than others?

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@maryz

Dear Lovebug61. I know the pain and frustration that come with OLP after many years. Because we are only 1% of the population it is a rare medical person who has interest in this disease. After 30+ year the severity ebbs and flows. Be sure that you see someone regularly/quarterly who can track your LP. After a particularly bad 6 months I have trays made for my teeth and use clobetazol 5% gel 3times a day until the inflammation and lesions are reduced. This was after Prednisone injections in my cheeks. I take 8000mg total of Tumeric with bioprine divided 3times a day with food. I have been told to eliminate ALL dairy as some patients seem to be allergic to the milk proteins…so I have been very diligent about reading labels. I am not yet sure if the diet change will help the LP but the Exema that I had developed about 3 years ago has disappeared and did so after about 5 days. My greatest success has been when we lived near Medical Schools and I was seen by Dr’s in the Oral Med or Stomotology clinics. They reviewed me quarterly, watched and tested for oral cancer. And tried various protocols etc to help. The pain at night was helped by using Xylimelts w/o mint, by OraCoat, During the day using small amount of Viscous Lidocaine. I also exercise daily to get my heart rate up as I believe that also increases the blood flow in my mouth which helps my healing. I hope some of this helps with your symptoms.

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Good morning Maryz,
I am about 6 months into treatment for OLP and vag lp. You have so much experience I wanted to ask you about symptoms. I am doing clobetazol 4x week and a liquid concoction of an anti-rejection medication. Some days my gums look "fine" and then they're flaming. I have had episodes of thrush. I am really frustrated. Before my diagnosis with biopsy, I had no lesions, no burning tongue-my dentist just seemed concerned that my gums were so red. He suspected lp and sent me to a specialist and my world turned upside down. Did you go through any allergy testing? I have some metal fillings-the specialist said, no that's not the cause, but I am considering having those replaced just in case it might make a difference. I am not satisfied treating the symptoms-I would like to know the cause and address that. what are your thoughts?

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@becsbuddy

Good evening @microgirl OLP must be so difficult to deal with. I don’t have it but I had awful mouth sores when I started steroids. This link may give you some more information.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3961895/
Do certain foods cause more trouble than others?

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Thank you-I have not made any connections about particular food yet. I need to search and begin at square one to eliminate foods and find out how much time before adding again.

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@microgirl

Good morning Maryz,
I am about 6 months into treatment for OLP and vag lp. You have so much experience I wanted to ask you about symptoms. I am doing clobetazol 4x week and a liquid concoction of an anti-rejection medication. Some days my gums look "fine" and then they're flaming. I have had episodes of thrush. I am really frustrated. Before my diagnosis with biopsy, I had no lesions, no burning tongue-my dentist just seemed concerned that my gums were so red. He suspected lp and sent me to a specialist and my world turned upside down. Did you go through any allergy testing? I have some metal fillings-the specialist said, no that's not the cause, but I am considering having those replaced just in case it might make a difference. I am not satisfied treating the symptoms-I would like to know the cause and address that. what are your thoughts?

Jump to this post

Good morning @microgirl I really do understand your wish to find the cause of the OLP. I would, too! OLP is an autoimmune disease which happens when your immune system gets out of whack. I, too, was shocked when my immune system went crazy and caused lesions on my brain. My research explained that most AD are genetic, but more research needs to be done. I attached a link to the Mayo Clinic site that will provide more information.
https://www.mayoclinic.org/diseases-conditions/oral-lichen-planus/symptoms-causes/syc-20350869

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@maryz

I have lichen Planus Orally, in the genitalia , and on my skin. Some form of anti inflammatory is regularly prescribed! There is no cure but you cam maintain a reasonably pain free life if you don’t let the lesions overwhelm you. I see 3 different Dr’s as they each treat a different body part. But I am reasonably pain free and am able to eat. Best of luck. My Gynecologist refereed to LP as the Trifecta. I have had the disease for about 37years. The treatment is much better now! Foods that aggravate my symptoms are: Any small amount of dairy, any nuts, acid foods and alcohol. Best of luck!

Jump to this post

@maryz and any other LP person – how do you get your calcium if you don't drink milk?

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@bustrbrwn22

@maryz and any other LP person – how do you get your calcium if you don't drink milk?

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@bustrbrwn22 I use lactose-free milk, 2%, tastes great. Also, I've found lactose-free cheddar cheese, yogurt, butter, cookies. It's all out there at the grocery stores and all tastes just fine. I also take Calcium 650 mg and am going to ask my doc for a Vitamin D prescription, since I've read it aids in the absorption of the calcium tablet. I also was on Alendronate for a few years and an planning to request it's return to my list of "must haves".

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I am new and notice it has been a while since anyone posted about LP. My mouth had begun to be react to spicy foods and generally become uncomfortable. When I mentioned it to my dentist, he mentioned signs of LP but he didn't think it was active. He changed my toothpaste and mouthwash to Biotene products, which seemed to help. I already had osteoarthritis in my knees from wear and tear (age and weight), so I didn't think much about it again until I developed excruciating pain in the back of my neck. When my neck and ear on one side began to get numb and show no signs of stopping, I went to the ER. After ruling out heart attack and stroke, the doctor diagnosed Shingles! Eventually my jaw and the inner part of it (gums and lining) were becoming numb, and I couldn't feel my outer ear. I had no idea that Shingles could do those things! Gabapentin seems to be the common prescription for relieving pain in the nerve endings. It helped at first, but gave me a foggy feeling. Now when I take it I have terrible and vivid nightmares! I have read about LP and Shingles, and they both seem to be activated by stress. They also have similar symptoms and effects. I am not sure if I have one or both or if one is being activated by the other. I am tired all of the time, and the severity of the pain goes up and down the scale. I have so many things going on in my life, I have not been able to keep up with the groups I follow everyday, but any comments or advice would be appreciated. Thank you for listening to me.

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