Lichen planus

I have had LP for several years and finally got it under control with Methotrexate. But I find eating mushrooms trigger an attack with me so I stay away from them. I am on just two 2.5mg. pills a week now (down from 8 pills a week) and on Stelara injection every 12 weeks.

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@lidnaj, My husband discovered he cannot eat morel mushrooms. This is a big deal here. People scour the woods for them. We have a friend with lots of acreage and we did enjoy hunting them. But, after years of being OK with them, he could not tolerate them and "lost" whatever else he was eating. All other mushrooms seem to be OK with him. What strange creatures are we! I wonder what kind of mushrooms you cannot tolerate. Would you mind telling me what steroid ointment you use? With all good wishes, @joybringe1

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Help. I developed this after Covid November 2020. I can not find anyone to treat this. My pcp told me it looked like oral lichen planus. I had to beg for lidocaine to make my own magic mouthwash. Currently I ran out but have Hurricane. It’s not cheap. I can’t find anyone to look at this. I got an appointment with an ENT 2 hours away…it took 3 months. He told me nothing was the matter. My response was it took 3 months to see him and I had treated it with self mixed magic mouthwash. All vinagered foods, toothpaste etc are killers. Currently I have 5 cold sores under my tongue, my salivary glad is inflamed as well as my gland on.the same side. ENT refused to biopsy. I have RA dx 10 years ago. Dermatologists appointments are 6 month wait, no dentist take new patients…do I go to an oncologist? Unfortunately all my doctors retired. This flare happened after I bit my cheek..again. Scar tissue there that makes it impossible not to rebite. My fabulous dentist retired , then passed away,..otherwise he would have helped me. It’s 3:30 am..I’m in so much pain I can’t sleep. Thank you and help. I currently am on a biologic infusion every month for my RA. My wbc is low..D3 low. All other vitamin levels ok, I am alo taking lysine, magnesium and zinc

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Help. I developed this after Covid November 2020. I can not find anyone to treat this. My pcp told me it looked like oral lichen planus. I had to beg for lidocaine to make my own magic mouthwash. Currently I ran out but have Hurricane. It’s not cheap. I can’t find anyone to look at this. I got an appointment with an ENT 2 hours away…it took 3 months. He told me nothing was the matter. My response was it took 3 months to see him and I had treated it with self mixed magic mouthwash. All vinagered foods, toothpaste etc are killers. Currently I have 5 cold sores under my tongue, my salivary glad is inflamed as well as my gland on.the same side. ENT refused to biopsy. I have RA dx 10 years ago. Dermatologists appointments are 6 month wait, no dentist take new patients…do I go to an oncologist? Unfortunately all my doctors retired. This flare happened after I bit my cheek..again. Scar tissue there that makes it impossible not to rebite. My fabulous dentist retired , then passed away,..otherwise he would have helped me. It’s 3:30 am..I’m in so much pain I can’t sleep. Thank you and help. I currently am on a biologic infusion every month for my RA. My wbc is low..D3 low. All other vitamin levels ok, I am alo taking lysine, magnesium and zinc

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Hi @mjt Oh you poor dear! Your mouth sounds so painful. You have my sincerest empathy trying to cope with that. When your mouth hurts it affects your entire body and takes you right down mentally, doesn’t it?

Unfortunately, having RA along with the infusions to treat it can lower your immune system’s ability to provide those all important white blood cells. I see your count is low and that puts you at risk for things like this. With your D3 level low, are you also taking supplements to elevate that again? it would really benefit you in the long run. I know it’s difficult to eat but do the best you can to boost your body’s immunity with antioxidant rich foods. Even if it’s baby food so that you’d don’t have to chew! Smoothies too, with fruits/veggies and protein powder.

It’s disheartening that dermatology appts are so far out! That would be your best source of help at this point. In the meantime we do have some current discussions with oral-lichen-Planus. If you take the time to read through these conversations there are several members who have dealt with this pain and found some solutions which have helped. @artist01 found relief with Protopic (tacrolimus ointment 0.1) which is a prescription ointment.

https://connect.mayoclinic.org/discussion/erosive-oral-lichen-planus/?pg=16
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https://connect.mayoclinic.org/discussion/oral-lichen-planus-3/
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https://connect.mayoclinic.org/comment/623528/
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https://connect.mayoclinic.org/comment/603864/

During my cancer treatments my mouth took a beating. Besides trying saltwater rinses, (1/4 tsp salt in 1 cup of lukewarm water-swish for a minute then spit), I also used several products by SPRY; toothpaste, mouth rinse and xylitol mouth mints. They contain no alcohol and are very soothing. Xylitol products promote natural healing in the mouth.
Another toothpaste to try is Arm & Hammer baking soda toothpaste.
Closys is another xylitol, alcohol free mouth rinse and Zellie’s xylitol Dental mints.
I really hope you find some relief soon. Have you tried any of the products I mentioned?

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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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Hi, I had major surgery 2 wks ago and due to trauma and all the different meds the lichen planus in my mouth is unbearable I have it all around my mouth my teeth feel like they are about to come out. Don’t know what yo do anymore? I’m exhausted from so much pain. Any advise please

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@lisa816 ask your doctor to prescribe you Lyderm gel (it also comes in cream form, but it is the gel that is more effective). It tasted very bitter, but cleared the lichen planus in my mouth as well as elsewhere even though I only applied it on my gums and inner cheeks.

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