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

PS. Some of the creams stop lichen planus from spreading but we risk cancer, because it slows down the "T" part of the immune system from attacking
and that is the one that fights cancer.

REPLY

Frankincense is an oil that fights inflammation naturally. I use it mixed with the best coconut oil available
, cold pressed, organic, etc. , and use it instead of cream and lotion. I also take it internally. I buy this empty capsules at the organic store in town, and put a dab of coconut oil and two drops of sacred Frankincense from Young Living, the best quality, and take a capsule every day. I understand it helps fight inflammation, which is the main promoter of cancer. I hope this helps. Loli

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A few things I failed to share with you re: the Budwig Protocol. smoothie……use raw Baby Kale can be found at Kroger Grvocery.
Food Grade Frankincense is high in electricity as our body runs on electricity. (See John Hopkins alternative medicine) I purchase
from Lina Hall ,Health Food , Madison Heights, Va. these are important items. Budwig Protocol ,Frankincense, and prayer for my
condition by myself and prayer warriors. These I give God glory for He wants what is best. He goes before us and gives wisdom.

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@loli

Frankincense is an oil that fights inflammation naturally. I use it mixed with the best coconut oil available
, cold pressed, organic, etc. , and use it instead of cream and lotion. I also take it internally. I buy this empty capsules at the organic store in town, and put a dab of coconut oil and two drops of sacred Frankincense from Young Living, the best quality, and take a capsule every day. I understand it helps fight inflammation, which is the main promoter of cancer. I hope this helps. Loli

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Frankincense is very strong (food grade) would I mix one drop of Frankincense with 2 parts coconut oil and put on the area of inflamation from lichen planus under my tongue. My issue is the acid in my stomach is making the inflamation worse also

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@loli

Frankincense is an oil that fights inflammation naturally. I use it mixed with the best coconut oil available
, cold pressed, organic, etc. , and use it instead of cream and lotion. I also take it internally. I buy this empty capsules at the organic store in town, and put a dab of coconut oil and two drops of sacred Frankincense from Young Living, the best quality, and take a capsule every day. I understand it helps fight inflammation, which is the main promoter of cancer. I hope this helps. Loli

Jump to this post

Dilute the frankincense more to start with, in coconut oil, and maybe take it internally in a capsule. Look into correcting your gut also.

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@lima

I worked at a pathology lab for 22 years. we were all exposed to excessive formalin. In 2017 I was diagnosed Lichen Planopilaris. I have been losing my hair rand my face gets swollen and red. I have been on Hyroxychroquine for 1 1/2 years and cyclosporine for 10 months and I get shots on my scalp once a month.My ANA has been negative so far. My doctor started reducing my cyclosporine from 3 tablets to 2 tablets a day and I feel my hair loss is coming back. I am very miserable. Please help. any advice is appreciated. Thank you

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Hello @lima, welcome to Connect. I'm sorry you are struggling to find help for a treatment for your condition. I'm tagging our moderator Kanaaz @kanaazpereira to see if she can move your discussion to the following discussion so that you can meet others with similar symptoms and your post will have more visibility.

Groups > Autoimmune Diseases > Erosive oral lichen planus
https://connect.mayoclinic.org/discussion/erosive-oral-lichen-planus/

Also, I saw the following clinical trial that may be of interest to you.

Mayo Clinic – Valchlor in the Treatment of Lichen Planopilaris
https://www.mayo.edu/research/clinical-trials/cls-20387109

John

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@lima

I worked at a pathology lab for 22 years. we were all exposed to excessive formalin. In 2017 I was diagnosed Lichen Planopilaris. I have been losing my hair rand my face gets swollen and red. I have been on Hyroxychroquine for 1 1/2 years and cyclosporine for 10 months and I get shots on my scalp once a month.My ANA has been negative so far. My doctor started reducing my cyclosporine from 3 tablets to 2 tablets a day and I feel my hair loss is coming back. I am very miserable. Please help. any advice is appreciated. Thank you

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My name is Beryl and I read your very sad email today …..we all know how horrible it is to have one of these "things" and how much suffering you have been going through….

I know if possible you will get help if you seek it from the Mayo Clinic , and you will get people in similar trouble as you trying to help you …..good luck , onwards and upwards ……Beryl

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@johnbishop

Hello @lima, welcome to Connect. I'm sorry you are struggling to find help for a treatment for your condition. I'm tagging our moderator Kanaaz @kanaazpereira to see if she can move your discussion to the following discussion so that you can meet others with similar symptoms and your post will have more visibility.

Groups > Autoimmune Diseases > Erosive oral lichen planus
https://connect.mayoclinic.org/discussion/erosive-oral-lichen-planus/

Also, I saw the following clinical trial that may be of interest to you.

Mayo Clinic – Valchlor in the Treatment of Lichen Planopilaris
https://www.mayo.edu/research/clinical-trials/cls-20387109

John

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Thank you John @johnbishop

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I worked at a pathology lab for 22 years. we were all exposed to excessive formalin. In 2017 I was diagnosed Lichen Planopilaris. I have been losing my hair rand my face gets swollen and red. I have been on Hyroxychroquine for 1 1/2 years and cyclosporine for 10 months and I get shots on my scalp once a month.My ANA has been negative so far. My doctor started reducing my cyclosporine from 3 tablets to 2 tablets a day and I feel my hair loss is coming back. I am very miserable. Please help. any advice is appreciated. Thank you

REPLY
@lima

I worked at a pathology lab for 22 years. we were all exposed to excessive formalin. In 2017 I was diagnosed Lichen Planopilaris. I have been losing my hair rand my face gets swollen and red. I have been on Hyroxychroquine for 1 1/2 years and cyclosporine for 10 months and I get shots on my scalp once a month.My ANA has been negative so far. My doctor started reducing my cyclosporine from 3 tablets to 2 tablets a day and I feel my hair loss is coming back. I am very miserable. Please help. any advice is appreciated. Thank you

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Hi @lima,

I moved your discussion Lichen Planopilaris and combined it with this existing discussion. As @johnbishop suggested, it would be beneficial for you to be introduced to the many members who have discussed much of what you are experiencing.
If you click on VIEW & REPLY in your email notification, you will see the whole discussion and can join in, meet, and participate with other members talking about their or their loved ones' experiences.

I'm glad you've connected with @beryl, and I'm confident that @ethanmcconkey @elizabethbryant @loli and others will also return with some more information that might help you.

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@lima

I worked at a pathology lab for 22 years. we were all exposed to excessive formalin. In 2017 I was diagnosed Lichen Planopilaris. I have been losing my hair rand my face gets swollen and red. I have been on Hyroxychroquine for 1 1/2 years and cyclosporine for 10 months and I get shots on my scalp once a month.My ANA has been negative so far. My doctor started reducing my cyclosporine from 3 tablets to 2 tablets a day and I feel my hair loss is coming back. I am very miserable. Please help. any advice is appreciated. Thank you

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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

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

Jump to this post

Hi Lima. I looked it up. I do not know if you would be willing to try essential oils on your scalp and face. This I use instead of expensive creams for my face anyway. Since my cancer, I make an effort to keep as natural as possible. I buy organic as much as I can, I drink water from glass, never plastic, and I do not use anything on my skin, if I cannot eat it. So, "first press organic coconut oil", in which, depending on the amount of oil, I mix sacred frankincense essential oil from Young Living. It is supposed to help with inflammation. I would try it in a small area first. This might sound silly, but I never took any medication for Lichen Planus, and my heart goes out to you, so this is all I can recommend. Hopefully, some of my friends from this blog, can help.
Loli

REPLY
@lima

I worked at a pathology lab for 22 years. we were all exposed to excessive formalin. In 2017 I was diagnosed Lichen Planopilaris. I have been losing my hair rand my face gets swollen and red. I have been on Hyroxychroquine for 1 1/2 years and cyclosporine for 10 months and I get shots on my scalp once a month.My ANA has been negative so far. My doctor started reducing my cyclosporine from 3 tablets to 2 tablets a day and I feel my hair loss is coming back. I am very miserable. Please help. any advice is appreciated. Thank you

Jump to this post

So sorry you are going through this @lima. I had oral lichen planus for many years and never found the trigger or a cure until it settled on a spot on my tongue causing a cancer. Once the cancer was removed, no more lichen planus. But your variety of this condition sounds awful. Can you go back to the effective dose of cyclosporine? I don't have any advice except to keep trying to find a medical team who can offer some better solutions. I remember when I was a chronic migraine sufferer two things helped. One was seeing a neurologist who was a migraine sufferer himself. Another was emailing the editor of a migraine newsletter who had good advice on how to keep the attacks under control using minimal medication. I do hope you find some good tips here on Mayo Connect.

REPLY
@loli

Hi Lima. I looked it up. I do not know if you would be willing to try essential oils on your scalp and face. This I use instead of expensive creams for my face anyway. Since my cancer, I make an effort to keep as natural as possible. I buy organic as much as I can, I drink water from glass, never plastic, and I do not use anything on my skin, if I cannot eat it. So, "first press organic coconut oil", in which, depending on the amount of oil, I mix sacred frankincense essential oil from Young Living. It is supposed to help with inflammation. I would try it in a small area first. This might sound silly, but I never took any medication for Lichen Planus, and my heart goes out to you, so this is all I can recommend. Hopefully, some of my friends from this blog, can help.
Loli

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@loli. Thank you for your suggestion I will definitely try the oils. I do also avoid all chemicals for my face and scalp as well. Thank you for your kindness and good thoughts

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@alpaca

So sorry you are going through this @lima. I had oral lichen planus for many years and never found the trigger or a cure until it settled on a spot on my tongue causing a cancer. Once the cancer was removed, no more lichen planus. But your variety of this condition sounds awful. Can you go back to the effective dose of cyclosporine? I don't have any advice except to keep trying to find a medical team who can offer some better solutions. I remember when I was a chronic migraine sufferer two things helped. One was seeing a neurologist who was a migraine sufferer himself. Another was emailing the editor of a migraine newsletter who had good advice on how to keep the attacks under control using minimal medication. I do hope you find some good tips here on Mayo Connect.

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@alpaca , Thank you .I'm out are looking for the answer. I believe somebody will have to answer for me. thank you

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