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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@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?

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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!

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@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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@chari9

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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@chari6 thanks for sharing. good to know. I have severe Oral LP and am now being put on hydroxychloroquine because I also have LP all over my skin and now my eyes. The flare-ups never stop. I'll bring this up to my ear dr when she returns my call.

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@chari9

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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Hello @chari9 you must be quite miserable with both LP and shingles. The combination must be so difficult! LP is an autoimmune disease but the shingles virus is an opportunistic virus that takes advantage of a lowered immune system. Read through this discussion and see what others have done. I’m sure that members @bustrbrwn22 and @artist01 and @microgirl will step up to help you

You might also be interested in this discussion on shingles. The discussion itself is old but the information doesn’t change.
https://connect.mayoclinic.org/discussion/shingles-3/
Other than the Biotene products, are you being treated for LP?

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@chari9. Hi Chari. @ I note that @becsbuddy has mentioned my name to you with respect to your LP. I just replied to another member in this thread (I forget the name already. Sorry!) so I hope you can locate my response. Laurie

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@artist01

@chari9. Hi Chari. @ I note that @becsbuddy has mentioned my name to you with respect to your LP. I just replied to another member in this thread (I forget the name already. Sorry!) so I hope you can locate my response. Laurie

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Hi @chari9 I found the comments Laurie is referring to. She’d replied to @fdixon63 @bustrbrwn22 regarding LP. They are in this group.

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