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?

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

gracie3 | @gracie3 | Feb 28 9:00pm

In reply to @parrot53 "Boka has a Coco Ginger toothpaste that may fit your requirements. https://www.boka.com/pages/our-ingredients" + (show)

Thanks but, unfortunately, ginger is also a trigger. Nothing spicy. Sigh.

smoir | @smoir | Mar 1 9:44am

I was just diagnosed with Lichen Planus in my gums! My gums get very swollen and sore. I had 2 biopsies on my gums to confirm this is what I have. A pharmacy is making a special rinse for my mouth next week, hoping it will work. I have had issues with my mouth for the last 5 years, burning on the outside and breaking out in severe rashes. ENT said it wasn't " burning mouth syndrome" the next time I saw him, he said" so for your burning mouth syndrome" ! He wanted to give me an anxiety drug, still don't know if it is burning mouth syndrome. Is there a test they can do for this ? Dermatologist said it was " peri oral dermatitis" , second dermatologist said it was " allergic contact dermatitis" ! They don't know if Lichen planus and the issue with my mouth are connected. Any input on this would be greatly appreciated. Thanks

Becky, Volunteer Mentor | @becsbuddy | Mar 1 7:08pm

@smoir Boy, what a terrible merry-go-round to be on! No one agrees and you’re left wanting treatment. At least, a pharmacy is making a rinse for you.
https://www.mayoclinic.org/diseases-conditions/oral-lichen-planus/symptoms-causes/syc-20350869
https://www.mayoclinic.org/diseases-conditions/burning-mouth-syndrome/symptoms-causes/syc-20350911
The one dentist said that it could be allergic contact dermatitis. You may want to ask your PCP for a referral to an allergist who could help figure this out. Or your dentist may suggest that that you see a periodontist (gum specialist).
This is all very confusing so you may want to do some more research. In the meantime, some other members may have some suggestions.

smoir | @smoir | Mar 2 5:35am

In reply to @becsbuddy "@smoir Boy, what a terrible merry-go-round to be on! No one agrees and you’re left wanting..." + (show)

Hello- yes, it has been a real roller coaster for sure.
I did see a periodontist, that’s who did the 2 biopsies. It took 5 years for someone to recommend a gum specialist to me. I’ve been to ENT, 2 different Dentists, oral surgeon, allergy specialist, natural path, family dr , 2 different dermatologists! Now a pharmacy that specializes in compounds ! I was using Carmex on my lips, but he dermatologist told me to stop using that, only use Vaseline on my lips.

spondee | @spondee | Mar 2 9:05am

In reply to @smoir "Hello- yes, it has been a real roller coaster for sure. I did see a periodontist,..." + (show)

This dermatologist has several informative videos about perioral dermatitis.
https://www.youtube.com/@DrDrayzday/search?query=perioral%20dermatitis

mjq | @mjq | Mar 3 12:53pm

In reply to @spondee "This dermatologist has several informative videos about perioral dermatitis. https://www.youtube.com/@DrDrayzday/search?query=perioral%20dermatitis" + (show)

I have just been diagnosed with Oral Lichen Planus. Now it is spreading to my face. I don't know what type of doctor can treat the whole situation-oral, facial and whatever and wherever it appears nested. Anyone been to Mayo Rochester? Can you recommend someone who specializes?

Becky, Volunteer Mentor | @becsbuddy | Mar 3 4:10pm

In reply to @mjq "I have just been diagnosed with Oral Lichen Planus. Now it is spreading to my face...." + (show)

@mjq I’m so sorry to hear about your OLP. Was this diagnosed by your PCP or other speciality?
https://www.mayoclinic.org/diseases-conditions/oral-lichen-planus/symptoms-causes/syc-20350869
Were you started on medication?
I know you would like to go to Mayo Rochester, but Mayo wants you to try all local resources first. So you want to find a knowledgeable rheumatologist or dermatologist in your area first. You can contact university medical centers or comprehensive medical centers to ask if they have doctors who treat OLP. Since this is a chronic disease, you want someone who is relatively nearby.
You can also call GARD, the genetic and rare diseases organization. They can probably give you the name of a doctor in your area. https://rarediseases.info.nih.gov/
Will you call your PCP tomorrow and get some referrals in your area?

mjq | @mjq | Mar 3 4:39pm

Thank you for the information. I was diagnosed ny an ENT and give oral steroids and oral steroid paste. Neither made much difference. I will see my regular dentist tomorrow. Perhaps he knows of someone to treat it locally. I can't get in to my dermatologist until April and my rheumatologist until next week.

I will also try calling GARD as it seems they may be the best bet. Thank you.

mjq | @mjq | Mar 3 4:41pm

Here is a link to one of the best medical explanations of Lichen Planus. The physical does a summary near the end if you prefer not to watch the entire presentation.

Does anyone take 'retinoids" as is mentioned in the video?