Lichen planus

Posted by firelady @firelady, Sep 2, 2012

I was diagnosed about two yrs ago with lichen planus an auto imune disease they say it is very rare and not contagious yet my younger brother has it also. I have the skin lichen planus as well as oral lichen planus which affects my gums, cheeks, and tongue. It is very , very painful. I had a very large back surgery in April and I got lichen planus sores on my back as a result of the trauma from surgery my incision that is twenty inches long healed but my sores from lichen planus are still open. I don’t know how to get them to heal and right now I have just developed an outbreak in my mouth. The pain is so deep in the nerves that I feel like my teeth are going to explode and I can feel my pulse under my teeth. I can’t explain the pain and I am begging for someone to tell me if they found anything that helps with the pain. Also I never heard of lichen planus , what can I expect from this disease? How often will I have outbreaks? will it ever go away? Should I have my teeth pulled out or will dentures make it even worse? Not too many doctors seem to know much if anything about this auto imune disease.

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

@rashida

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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Very glad you have gotten it tamed. Mine is too through steroid ointment (vaginal). Anyway, do you know I had an incident with mushrooms, which I have been trying to use to replace protein in my low carb diet. I'm not sure if it is the same thing but I've been nauseous ever since last week. I'm going to cut them out and see if they are the cause. Anyway, thank you for the info. Good luck. Linda

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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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@joybringer1

@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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Hi, Joy. The mushrooms are just the regular button kind from the grocery store. I usually just slice them up for salad. This casserole has a pound of them in it. Anyhoo… the medicine is Betamethasone in the evening and tacrolimus in the morning. I've been using this for a year, I believe. Take care! Linda

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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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@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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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?

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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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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
~~~
https://connect.mayoclinic.org/discussion/oral-lichen-planus-3/
~~~
https://connect.mayoclinic.org/comment/623528/
~~~
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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@loribmt

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
~~~
https://connect.mayoclinic.org/discussion/oral-lichen-planus-3/
~~~
https://connect.mayoclinic.org/comment/623528/
~~~
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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@mjt I agree with loribmt Also I used baking soda mix in water after the saltwater rinse.Also at different times I used honey water but all this took several days to heal. Be patient but do get on a treatment plan yours or Dr,s Good luck

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