Erosive oral lichen planus

Posted by germany2 @germany2, Mar 20, 2017

Hello
I'm new to the group. I was diagnosed with erosive lichen planus 4 years ago and it has been a nightmare since. Mine has progressed from my mouth to my esophagus, nose and eyes. I've seen so many doctors @ Vanderbilt and St Thomas Hospital who have no idea how to treat my illness. I've. Even advised to go to the Mayo Clinic in Rochester but I'm really not sure what doctor or doctors have experience with treating this disease. Any help would be appreciated
Thanks

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@rashida

@artist01 I hope you are living in Toronto - I need a good dermatologist in Toronto!

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@rashida Nope, sorry, Rashida. I live on Vancouver Island. I hope you have success in finding a good dermatologist in Toronto. They're out there somewhere! 💘 Hugs. Laurie

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@artist01

@rashida Nope, sorry, Rashida. I live on Vancouver Island. I hope you have success in finding a good dermatologist in Toronto. They're out there somewhere! 💘 Hugs. Laurie

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@artist01 😔

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Hello everyone! After reading some of the articles, there were a few things mentioned which may be helpful such as: curcumin with bioperine (pepper), probiotics, green tea. I think I am going to look into a diet to lower inflamation.

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@microgirl

Hello everyone! After reading some of the articles, there were a few things mentioned which may be helpful such as: curcumin with bioperine (pepper), probiotics, green tea. I think I am going to look into a diet to lower inflamation.

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Please let everyone know what you’ve learned!

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@becsbuddy

Please let everyone know what you’ve learned!

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From the articles I read, it is clear to me that inflammation is a huge problem when it comes to autoimmune diseases. Inflammation causes the immune system to respond and sometime to attack itself. A small list of foods which are good at fighting inflammation are included in the Mediterranean diet. Olive oil, turmeric, ginger, garlic, salmon, walnuts, brazil nuts, whole grains such as quinoa, oats, barley, chia, etc.
The things which increase inflammation are processed foods, sugar, processed meats.
Antioxidants act to combat cell damage.
I am currently using clobetasol gel 4x per week and an anti-rejection swish for 60 seconds.
I also have vaginal symptoms--I have been taking horse back riding lessons for some time as an answer to stress which has been wonderful. Within the last 5 weeks I have been experiencing discomfort while riding not felt before. I purchased some undergarments with significant padding in order to protect these tender areas, and I thought this was going to be the answer, but I may need to stop the riding which greatly saddens me.
I just purchased a guidebook to an anti-inflammatory diet, so I will mention any results.
I am trying to remain positive and do what I can to help myself.
microgirl

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@artist01

@becsbuddy Hi Becky. I had my first dermatologist appointment this morning and, as promised, I'm here to share the result.
After examining my mouth, the doctor confirmed what I already knew, that my OLP is extensive. That in itself was gratifying to hear because I felt he wouldn't just brush me off! I gave him a long list of prescriptions I'd been given by other doctors, as well as many over the counter remedies and CBD Oil. He asked how many times per day and for what period of time I'd used the Clobetasol.
I told him, just once a day and for one month. He advised that his first line of defence is Clobetasol, as often as SIX times a day. He wants me to try it FOUR times a day, and he'll phone me in one month, as well as see me again in 3 months. He assured me I'll need frequent monitoring by him, including cancer screening, often. I feel good about this appointment. Hope? Maybe. Laur

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Is this Clobetasol a mouthwash, pill, or lotion?

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@rashida

Is this Clobetasol a mouthwash, pill, or lotion?

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@rashida It's none of those three. It's an Ointment. The dermatologist directed me to apply it to the oral lesions four times daily. Everything you read about it tells you NOT to put it in your mouth but when reading about oral lichen planus, all specialists (U.S., Canada, and others) indicate that it's their first line of defence for this stubborn and incurable condition. At the least, it gives temporary relief from the pain. In the U.S., it might be under a different name than "Teva-Clobetasol, 1/-Propionate Topical Anti-inflammatory Steroid Ointment, 0.05% w/w, p/p", (the label in Canada). Your pharmacist will know about it, but might also advise NOT to put it in your mouth! Lol. Google it for oral lichen planus. Good luck. Laurie

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@artist01

@rashida It's none of those three. It's an Ointment. The dermatologist directed me to apply it to the oral lesions four times daily. Everything you read about it tells you NOT to put it in your mouth but when reading about oral lichen planus, all specialists (U.S., Canada, and others) indicate that it's their first line of defence for this stubborn and incurable condition. At the least, it gives temporary relief from the pain. In the U.S., it might be under a different name than "Teva-Clobetasol, 1/-Propionate Topical Anti-inflammatory Steroid Ointment, 0.05% w/w, p/p", (the label in Canada). Your pharmacist will know about it, but might also advise NOT to put it in your mouth! Lol. Google it for oral lichen planus. Good luck. Laurie

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@artist01 I have used Oracort which also is applied in the mouth. Didn’t work for me. None of the Clobetasol products have worked for me (for psoriasis) although I have never been prescribed it in the mouth.

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Hello everyone,
I had an appointment with my specialist yesterday. I am so excited with my results!!! He was very pleased and said, "wow, it looks like you have a whole new mouth!" I mentioned that I am trying an anti-inflammatory diet to which he said that studies don't show that that is helpful, but that that is healthy and he is not against "non-conventional" methods. I think doctors want to treat symptoms rather than find a cause sometimes. My specialist is very good and I trust him, but I want to try to do what I can to take ownership of my condition/body.
So I am dropping down from 4x per day clobetasole on my gums to 3x per day, also using an anti-rejection rinse 3x per week and I will see him in 6 months as opposed to 3 months!
I have been trying to eliminate processed foods as best I can, simple sugars, I use lozenges for dry mouth and have changed my toothpaste from Crest to baking soda toothpaste. I am basically trying what I can to boost my immunity with fresh veggies, fruits, nuts, chia seeds, flax seeds, etc.
I pray that others may have good results soon,
microgirl

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@microgirl

Hello everyone,
I had an appointment with my specialist yesterday. I am so excited with my results!!! He was very pleased and said, "wow, it looks like you have a whole new mouth!" I mentioned that I am trying an anti-inflammatory diet to which he said that studies don't show that that is helpful, but that that is healthy and he is not against "non-conventional" methods. I think doctors want to treat symptoms rather than find a cause sometimes. My specialist is very good and I trust him, but I want to try to do what I can to take ownership of my condition/body.
So I am dropping down from 4x per day clobetasole on my gums to 3x per day, also using an anti-rejection rinse 3x per week and I will see him in 6 months as opposed to 3 months!
I have been trying to eliminate processed foods as best I can, simple sugars, I use lozenges for dry mouth and have changed my toothpaste from Crest to baking soda toothpaste. I am basically trying what I can to boost my immunity with fresh veggies, fruits, nuts, chia seeds, flax seeds, etc.
I pray that others may have good results soon,
microgirl

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@microgirl What a great report! Please stay with Connect—you’ll be such a great help to others! Becky

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