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Lichen planus

Autoimmune Diseases | Last Active: Oct 2 10:07pm | Replies (98)

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@mjt

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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Replies to "Help. I developed this after Covid November 2020. I can not find anyone to treat this...."

Hello @mjt, Welcome to Connect. Your symptoms sound a lot like mouth ulcers and I know they can be very painful. @loribmt @lioness and @lacy2 may have posted on the topic and may have some information to share with you. I did find some home treatments that may be helpful if you have not already tried them.

Mouth Ulcer: What Is It, Symptoms, Causes & Treatment: https://my.clevelandclinic.org/health/diseases/21766-mouth-ulcer

I know you mentioned you have not been able to schedule an appointment as soon possible. Does your healthcare provider offer telehealth appointments as an alternative?

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?

I don’t have that condition and can only suggest try homeopathic Sulfer under the tongue because it stops my cold sores from forming scabs. They just reverse themselves. Wishing you well.