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

Liked by fancyrph

@loli

Hi Lima, I am so sorry to hear what you are going through. I was diagnosed with lichen planus in my cheek maybe 15 years ago. Five years ago, it turned into squamous cell carcinoma. I went through surgery and radiation and have been cancer and Lichen planus free for five years. I do not know what to tell you. I will have to go on line and look into your condition to better understand it. All I can tell you, is that juicing has made me healthier. Have you checked your vitamin D levels? Just wondering I will get back to you later. Loli

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@loli, My Vitamin D levels are fine. I have been juicing probably from age 40 and I am 51 now. I hope my scalp lesions don't turn into cancer but that only means I have to keep eye on them

I have been diagnosed with severe erosive oral lichens planus by biopsy. Had it for 4 years now. It was so bad a few years ago that I lost 30 lbs because eating was very painful and difficult. I could not even touch my face on the outside with causing pain. Going on the assumption this is an autoimmune disorder, I have tried many things. I am managing now, so will share some things with the group. This is not an advertisement. I am listing products I've used that helped me in my own personal experience and will share some of my tips. Since digestion starts in the mouth, eating healthy to improve gut and function could help (especially for leaky gut condition which I have).

I stopped all NSAID use; I was taking Mobic(r) or meloxicam which is a very high powered NSAID that probably caused leaky gut condition. I think the NSAID is what started it all. Also was applying NSAID topically as gel form "Pennsaid".
Got tested for food allergies – see below
Get teeth cleaning every 3 months
Swish & spit with coconut oil before eating and all the time
Brushed teeth with coconut oil
Use water flosser on lowest setting
Stopped using big name brand toothpastes. Tried these: Squiggle-thumbs up, Peelu-doesn't burn but is a bit gritty, no flavor, charcoal DIY – AVOID ANYTHING CINNAMON AND MINT
Used COCONUT oil for oil pulling, and swished some in mouth before eating which can make eating tolerable
Glutamed by NuMecica- medical food (not RX) – for cell regeneration support, I add some licorice drops (non-alcoholic) since licorice is supposed to act like steroids. Still use this for flare-ups:
"Healthy Teeth and Gum Mouthwash, Super Effective" product from Dr. Arenander's product line. This does have peppermint oil but not enough to bother me.
Gelclair Rx of hyaluronic acid
Lidocaine topical, viscous – RX
Vitamin D – I was deficient so replaced by RX for 2 months and level is normal now
Positive for gluten intolerance by saliva test.
Food allergies – sent in samples of hair and a buccal swab. I'm not quite sure if allergies were tested on hair samples (which would be less accurate I think) or the DNA swab but were listed for MANY:
->chicken meat, beef, veal, black tea, cheddar cheese, cinnamon, components of egg and dairy, tomatoes, strawberries, gluten, cacao (chocolate), walnuts… THEREFORE, I have tried to cut out many of these items just in case. I did a 3 day cleanse consisting of smoothies & gluten free / vegan soups, everything dairy & gluten free and I had significant improvement. I now have 1 or 2 of these usually daily. Interestingly, a drink with lemon juice, cayenne pepper, and pomegranate seemed to do good. I tried this of course after the improvement because I would have never considered ingesting lemon or cayenne pepper while flaring-up.

Stress causes flare-ups. I use melatonin for calming.
The oral surgeon prescribed Lidex gel, which is not meant for application on mucous membranes, so it stings. I only use with absolute severe flare-up.
I have taken Medrol Dosepak (steroids) before. First time it seems to help but not after that. I was put on low-dose prednisone (steroid) for a year but that didn't help.
Have not tried any RX immuno-modulators like Imuran; have not tried Dapsone.
I think my nose is mildly affected. I think my eyes are affected too as I am getting stents put in tear ducts since they are blocked from tear drainage by inflammation.
Suffering is horrendous!
Will end here for now.

@fancyrph

I have been diagnosed with severe erosive oral lichens planus by biopsy. Had it for 4 years now. It was so bad a few years ago that I lost 30 lbs because eating was very painful and difficult. I could not even touch my face on the outside with causing pain. Going on the assumption this is an autoimmune disorder, I have tried many things. I am managing now, so will share some things with the group. This is not an advertisement. I am listing products I've used that helped me in my own personal experience and will share some of my tips. Since digestion starts in the mouth, eating healthy to improve gut and function could help (especially for leaky gut condition which I have).

I stopped all NSAID use; I was taking Mobic(r) or meloxicam which is a very high powered NSAID that probably caused leaky gut condition. I think the NSAID is what started it all. Also was applying NSAID topically as gel form "Pennsaid".
Got tested for food allergies – see below
Get teeth cleaning every 3 months
Swish & spit with coconut oil before eating and all the time
Brushed teeth with coconut oil
Use water flosser on lowest setting
Stopped using big name brand toothpastes. Tried these: Squiggle-thumbs up, Peelu-doesn't burn but is a bit gritty, no flavor, charcoal DIY – AVOID ANYTHING CINNAMON AND MINT
Used COCONUT oil for oil pulling, and swished some in mouth before eating which can make eating tolerable
Glutamed by NuMecica- medical food (not RX) – for cell regeneration support, I add some licorice drops (non-alcoholic) since licorice is supposed to act like steroids. Still use this for flare-ups:
"Healthy Teeth and Gum Mouthwash, Super Effective" product from Dr. Arenander's product line. This does have peppermint oil but not enough to bother me.
Gelclair Rx of hyaluronic acid
Lidocaine topical, viscous – RX
Vitamin D – I was deficient so replaced by RX for 2 months and level is normal now
Positive for gluten intolerance by saliva test.
Food allergies – sent in samples of hair and a buccal swab. I'm not quite sure if allergies were tested on hair samples (which would be less accurate I think) or the DNA swab but were listed for MANY:
->chicken meat, beef, veal, black tea, cheddar cheese, cinnamon, components of egg and dairy, tomatoes, strawberries, gluten, cacao (chocolate), walnuts… THEREFORE, I have tried to cut out many of these items just in case. I did a 3 day cleanse consisting of smoothies & gluten free / vegan soups, everything dairy & gluten free and I had significant improvement. I now have 1 or 2 of these usually daily. Interestingly, a drink with lemon juice, cayenne pepper, and pomegranate seemed to do good. I tried this of course after the improvement because I would have never considered ingesting lemon or cayenne pepper while flaring-up.

Stress causes flare-ups. I use melatonin for calming.
The oral surgeon prescribed Lidex gel, which is not meant for application on mucous membranes, so it stings. I only use with absolute severe flare-up.
I have taken Medrol Dosepak (steroids) before. First time it seems to help but not after that. I was put on low-dose prednisone (steroid) for a year but that didn't help.
Have not tried any RX immuno-modulators like Imuran; have not tried Dapsone.
I think my nose is mildly affected. I think my eyes are affected too as I am getting stents put in tear ducts since they are blocked from tear drainage by inflammation.
Suffering is horrendous!
Will end here for now.

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Chiropractor services interestingly seemed to give me improvements in mouth conditions even though I was going for something else.
Stevia- forgot to mention I had allergy to this that manifested in form severe hot flash so the use of stevia is not without risk. Thanks

@fancyrph

Chiropractor services interestingly seemed to give me improvements in mouth conditions even though I was going for something else.
Stevia- forgot to mention I had allergy to this that manifested in form severe hot flash so the use of stevia is not without risk. Thanks

Jump to this post

Hello @fancyrph, welcome to Connect. Thank you for sharing your post. You've certainly tried a lot of different treatments. Hopefully others may be able to offer some suggestions. I did find a couple of articles that may provide more information for you.

Oral lichen planus: Challenge and management
https://onlinelibrary.wiley.com/doi/full/10.1111/odi.12712

The effects of photodynamic and low-level laser therapy for treatment of oral lichen planus—A systematic review and meta-analysis
https://www.sciencedirect.com/science/article/abs/pii/S1572100018301613

John

I have some information I would like to share.
My husband came down with lichen planus many years ago.He was treated at Tufts dental clinic.in Boston.They treated with a cream he had to put on a cotton ball and place it on the ulcer.
He did it for maybe 10 days or more.
It has been years that hes been free of lichen planus. I don't remember the name as it has been maybe 10 yrs or more.
There is a cream treatment for lichen planus.Once he used the cream ,he has been free of it.
Believe me there is hope for you.
It's just a matter of getting that cream.
I'm going to try and find the name for you.
Remember stress makes the condition much worse.
My husbands lichen planus was brought on by stress.
Please consult a medical school of dentistry.
They saved my husband from the awful feeling in your mouth.God bless

@sheetrock0131

I have some information I would like to share.
My husband came down with lichen planus many years ago.He was treated at Tufts dental clinic.in Boston.They treated with a cream he had to put on a cotton ball and place it on the ulcer.
He did it for maybe 10 days or more.
It has been years that hes been free of lichen planus. I don't remember the name as it has been maybe 10 yrs or more.
There is a cream treatment for lichen planus.Once he used the cream ,he has been free of it.
Believe me there is hope for you.
It's just a matter of getting that cream.
I'm going to try and find the name for you.
Remember stress makes the condition much worse.
My husbands lichen planus was brought on by stress.
Please consult a medical school of dentistry.
They saved my husband from the awful feeling in your mouth.God bless

Jump to this post

Thank you, and I hope you remember the name.

@fancyrph

I have been diagnosed with severe erosive oral lichens planus by biopsy. Had it for 4 years now. It was so bad a few years ago that I lost 30 lbs because eating was very painful and difficult. I could not even touch my face on the outside with causing pain. Going on the assumption this is an autoimmune disorder, I have tried many things. I am managing now, so will share some things with the group. This is not an advertisement. I am listing products I've used that helped me in my own personal experience and will share some of my tips. Since digestion starts in the mouth, eating healthy to improve gut and function could help (especially for leaky gut condition which I have).

I stopped all NSAID use; I was taking Mobic(r) or meloxicam which is a very high powered NSAID that probably caused leaky gut condition. I think the NSAID is what started it all. Also was applying NSAID topically as gel form "Pennsaid".
Got tested for food allergies – see below
Get teeth cleaning every 3 months
Swish & spit with coconut oil before eating and all the time
Brushed teeth with coconut oil
Use water flosser on lowest setting
Stopped using big name brand toothpastes. Tried these: Squiggle-thumbs up, Peelu-doesn't burn but is a bit gritty, no flavor, charcoal DIY – AVOID ANYTHING CINNAMON AND MINT
Used COCONUT oil for oil pulling, and swished some in mouth before eating which can make eating tolerable
Glutamed by NuMecica- medical food (not RX) – for cell regeneration support, I add some licorice drops (non-alcoholic) since licorice is supposed to act like steroids. Still use this for flare-ups:
"Healthy Teeth and Gum Mouthwash, Super Effective" product from Dr. Arenander's product line. This does have peppermint oil but not enough to bother me.
Gelclair Rx of hyaluronic acid
Lidocaine topical, viscous – RX
Vitamin D – I was deficient so replaced by RX for 2 months and level is normal now
Positive for gluten intolerance by saliva test.
Food allergies – sent in samples of hair and a buccal swab. I'm not quite sure if allergies were tested on hair samples (which would be less accurate I think) or the DNA swab but were listed for MANY:
->chicken meat, beef, veal, black tea, cheddar cheese, cinnamon, components of egg and dairy, tomatoes, strawberries, gluten, cacao (chocolate), walnuts… THEREFORE, I have tried to cut out many of these items just in case. I did a 3 day cleanse consisting of smoothies & gluten free / vegan soups, everything dairy & gluten free and I had significant improvement. I now have 1 or 2 of these usually daily. Interestingly, a drink with lemon juice, cayenne pepper, and pomegranate seemed to do good. I tried this of course after the improvement because I would have never considered ingesting lemon or cayenne pepper while flaring-up.

Stress causes flare-ups. I use melatonin for calming.
The oral surgeon prescribed Lidex gel, which is not meant for application on mucous membranes, so it stings. I only use with absolute severe flare-up.
I have taken Medrol Dosepak (steroids) before. First time it seems to help but not after that. I was put on low-dose prednisone (steroid) for a year but that didn't help.
Have not tried any RX immuno-modulators like Imuran; have not tried Dapsone.
I think my nose is mildly affected. I think my eyes are affected too as I am getting stents put in tear ducts since they are blocked from tear drainage by inflammation.
Suffering is horrendous!
Will end here for now.

Jump to this post

I too have heard that Squigle toothpaste is very good. No foaming agent, some fluoride and xylitol. I used to have to use baby toothpaste.

Hi new to the group. Diagnosed with erosive lichen planus in June 2018 after dealing with it for nealy 10 years. No dentist or doctor could figure out what this was. In June I found a new dentist, she diagnosed it, gave me a ton of info, suggested as much organic food as possible, little to no sugar, and check my vitamins. She gave me a steroid script for the lesions and an incredible mouth rinse containing lidocaine for the rest of the mouth pain. I found a company that sells a vitamin b mixture that has healed my mouth by 85% since June. Based on the previous comments, I need to check my vitamin d levels as well.

Liked by lioness

@dreamer60

Hi new to the group. Diagnosed with erosive lichen planus in June 2018 after dealing with it for nealy 10 years. No dentist or doctor could figure out what this was. In June I found a new dentist, she diagnosed it, gave me a ton of info, suggested as much organic food as possible, little to no sugar, and check my vitamins. She gave me a steroid script for the lesions and an incredible mouth rinse containing lidocaine for the rest of the mouth pain. I found a company that sells a vitamin b mixture that has healed my mouth by 85% since June. Based on the previous comments, I need to check my vitamin d levels as well.

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@dreamer60 This is an interesting story. Treatment of LP is 99% the steroid, rather than all the other things you mention. The problem with steroids is that they can cause serious side effects, some down the road. LP can also progress to burning mouth syndrome (BMS), which is also something that the medical profession seems to know nothing about and declines to bother with. Top specialists in oral pathology in NYC tell me there is nothing you can do. Both these conditions are in fact wide spread and doctors just seem to ignore them.

@dreamer60

Hi new to the group. Diagnosed with erosive lichen planus in June 2018 after dealing with it for nealy 10 years. No dentist or doctor could figure out what this was. In June I found a new dentist, she diagnosed it, gave me a ton of info, suggested as much organic food as possible, little to no sugar, and check my vitamins. She gave me a steroid script for the lesions and an incredible mouth rinse containing lidocaine for the rest of the mouth pain. I found a company that sells a vitamin b mixture that has healed my mouth by 85% since June. Based on the previous comments, I need to check my vitamin d levels as well.

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So nice to read good news!@dreamer60! Thank you

@jshdma

@dreamer60 This is an interesting story. Treatment of LP is 99% the steroid, rather than all the other things you mention. The problem with steroids is that they can cause serious side effects, some down the road. LP can also progress to burning mouth syndrome (BMS), which is also something that the medical profession seems to know nothing about and declines to bother with. Top specialists in oral pathology in NYC tell me there is nothing you can do. Both these conditions are in fact wide spread and doctors just seem to ignore them.

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@jshdma I had steroids for OLP too and they were the only things that eased the pain. But they didn't heal the lesions. I had one painful lesion which persisted for years and finally turned to cancer. Maybe my OLP was different but maybe a holistic approach is the way to go. I must point out that only a tiny percentage are a precursor to cancer.

@dreamer60

Hi new to the group. Diagnosed with erosive lichen planus in June 2018 after dealing with it for nealy 10 years. No dentist or doctor could figure out what this was. In June I found a new dentist, she diagnosed it, gave me a ton of info, suggested as much organic food as possible, little to no sugar, and check my vitamins. She gave me a steroid script for the lesions and an incredible mouth rinse containing lidocaine for the rest of the mouth pain. I found a company that sells a vitamin b mixture that has healed my mouth by 85% since June. Based on the previous comments, I need to check my vitamin d levels as well.

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@dreamer60 Hi that must be so painful I found a website that is about EOLP it is rarediseases.info.nih.gov/oral lichen planus. This is a naturel remedies that might help as long term steriods arent good for you.

@jshdma

@dreamer60 This is an interesting story. Treatment of LP is 99% the steroid, rather than all the other things you mention. The problem with steroids is that they can cause serious side effects, some down the road. LP can also progress to burning mouth syndrome (BMS), which is also something that the medical profession seems to know nothing about and declines to bother with. Top specialists in oral pathology in NYC tell me there is nothing you can do. Both these conditions are in fact wide spread and doctors just seem to ignore them.

Jump to this post

Yeah I was concerned about the steroid cream at first. But, I only used it on the visible sores. They have diminished enough to where I do not need the cream on a regular basis. There is a lot of truth to not having sugar. My mouth had healed up so much that I treated myself with all the things I haven't been able to eat for a long time. Which included lots of "naughty" sweets! I LOVE sugary foods. Well, I have been paying the price for that. I have had a flare up. I went back on my mouth rinse and am starting to feel better. Won't do that again!

That is interesting @dreamer60 My one lesion was so painful I took oral steroids. Think it was prednisone. Certainly couldn't take that long term.

@dreamer60

Yeah I was concerned about the steroid cream at first. But, I only used it on the visible sores. They have diminished enough to where I do not need the cream on a regular basis. There is a lot of truth to not having sugar. My mouth had healed up so much that I treated myself with all the things I haven't been able to eat for a long time. Which included lots of "naughty" sweets! I LOVE sugary foods. Well, I have been paying the price for that. I have had a flare up. I went back on my mouth rinse and am starting to feel better. Won't do that again!

Jump to this post

@dreamer60 Lol learnt your lesson thats what it takes I did same aboit sweets ,but with my triglycerides sugar really bumped up the number so now avoiding it as much as possible ,hard, we live and learn ?

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