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

Hi, @elizabethbryant — your oral lichen planus sounds painful and challenging with difficulties chewing your food. I'm sorry to hear that stress from a family emergency has caused a problem that had gotten a lot better to flare again.

I've moved your post here, because I thought that other members with any type of oral lichen planus would be of help to you and may have thoughts on what could provide relief.

Has your ENT had any suggestions for you on how to manage the painful talking and chewing you are experiencing, @elizabethbryant?

REPLY

My husband suffered many years with lichen planus.He received care from Tufts medical center in Boston ,Ma.
It's a dental school.
They put him on a cream called ,I'm pretty sure it was bethamethasone.You can google it
He put it on twice a day with a cotton ball.
He's been pain free.
If by chance,which is few and far between.
He just puts cream on ot,and within a day or so it's completely gone.You can be free of it.Good luck in your research.
Please let me know how it worked for you..

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Hi, @sheetrock0131 — I appreciate this useful tip for @elizabethbryant. Does this look like the cream you were talking about: https://mayocl.in/2v7bvMH?

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@sheetrock0131

My husband suffered many years with lichen planus.He received care from Tufts medical center in Boston ,Ma.
It's a dental school.
They put him on a cream called ,I'm pretty sure it was bethamethasone.You can google it
He put it on twice a day with a cotton ball.
He's been pain free.
If by chance,which is few and far between.
He just puts cream on ot,and within a day or so it's completely gone.You can be free of it.Good luck in your research.
Please let me know how it worked for you..

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Was your husband's oral lichen planus. My lichen planus is under the tongue area and on the tongue. I will google bethamethasone.
Any other info. Please send. The name of his physician. I traveled from Central Virginia to John Hopkins about a dozen times
and had part of my tongue removed. Now the lichen planus has started on the opposite side of mouth under the tongue.
Any information is greatly appreciated. UVA did not diagnosis soon enough and this stuff went into oral stage on cancer which
cost me part of my tongue, now I have scare tissue…..not good……and pain…..Thank you so very much for your input.

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@lisalucier

Hi, @elizabethbryant — your oral lichen planus sounds painful and challenging with difficulties chewing your food. I'm sorry to hear that stress from a family emergency has caused a problem that had gotten a lot better to flare again.

I've moved your post here, because I thought that other members with any type of oral lichen planus would be of help to you and may have thoughts on what could provide relief.

Has your ENT had any suggestions for you on how to manage the painful talking and chewing you are experiencing, @elizabethbryant?

Jump to this post

The most concern over the lichen planus is the right side under the tongue went into errosive lichen planus and then
stage one cancer and part of my tongue was removed. My ENT told me to go to natural remedies there is no cure.
Now the family emergency set the other under side of my tongue off with lichen planus. My ENT saw it and said
it will not go away. I have used steroids, which I believe have only thin the oral tissue in that area and caused bleeding
I must rid my body of acid to and stress to gain control over the situation. I was really doing great until the situation
hit my household. I understand Boston has some great doctors, but no one seems to know (medical) what to do
with this. Thank you anyone who can suggest something. I looked up Bethamethasone and it states no to use it inside
the mouth

Liked by sheetrock0131

REPLY

have been told by my ENT to use a drug to compromise the Immune System to keep it from attacking that particular tissue. It would be a drug
that is used for transplant patients. I am so sorry to hear of the awful experience you are having also. Eliminate as much stress as possible
take the anti rejection drug to calm it down and eat lots of kale in smoothie, no sugar. My ENT told me to see a hompathic doctor.
I do the Budwig Protocol also. I understand that food grade Frankincense helps a few drops in a bottle of water and a lot of water.
Make the body akaline. No acid producing foods. Hope this helps.

REPLY
@sheetrock0131

My husband suffered many years with lichen planus.He received care from Tufts medical center in Boston ,Ma.
It's a dental school.
They put him on a cream called ,I'm pretty sure it was bethamethasone.You can google it
He put it on twice a day with a cotton ball.
He's been pain free.
If by chance,which is few and far between.
He just puts cream on ot,and within a day or so it's completely gone.You can be free of it.Good luck in your research.
Please let me know how it worked for you..

Jump to this post

So sorry to hear such awful news.
My husband had lichen planus on the inside of his cheek.
It will stay dormer in his body forever.However if he's badly stresses there's a chance it will come back.Only once since his flair up did it come back. I thought I may have given you the wrong name.Ill.look for it and send the name off to you.
My suggestion to you would be Tufts school od dentistry.
The Dr he saw has since retired.I would highly recommend you to at least call there clinic.
My husband on his first visit was well taken care of.
I'll check for the cream. Good luck..

REPLY
@sheetrock0131

My husband suffered many years with lichen planus.He received care from Tufts medical center in Boston ,Ma.
It's a dental school.
They put him on a cream called ,I'm pretty sure it was bethamethasone.You can google it
He put it on twice a day with a cotton ball.
He's been pain free.
If by chance,which is few and far between.
He just puts cream on ot,and within a day or so it's completely gone.You can be free of it.Good luck in your research.
Please let me know how it worked for you..

Jump to this post

PLEASE, check for the cream, sincere thanks from the heart

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@elizabethbryant

I have Oral Lichen Planus which is the immune system attacking tissue under the tongue. The Lichen Planus spread when I was under stress in the
last 4 weeks and has anyone heard of a cure for this condition. I had this under my tongue on the right side in 2016 and it turned into cancer.
When we had a family emergency, my children nor I realized the stress would create lichen planus on the left side under tongue, It has become
to painful to talk or chew food. I was doing great until the stress hit, really getting better as unbelievable as it was to the doctor. ENT Surgeon.
HELP!!!!!! anyone. The type of lichen planus I have is not virus related.

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Hi @elizabethbryant. I don't have experience with Mayo but I have a friend who had a lengthy case of oral lichen planus. Her dermatologist checked her zinc level which was low. After supplementing, it cleared. Every body is different but it may be worth asking for a zinc level. Zinc plays a role in the immune system. I wish you well on your healing journey!

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@elizabethbryant

I have Oral Lichen Planus which is the immune system attacking tissue under the tongue. The Lichen Planus spread when I was under stress in the
last 4 weeks and has anyone heard of a cure for this condition. I had this under my tongue on the right side in 2016 and it turned into cancer.
When we had a family emergency, my children nor I realized the stress would create lichen planus on the left side under tongue, It has become
to painful to talk or chew food. I was doing great until the stress hit, really getting better as unbelievable as it was to the doctor. ENT Surgeon.
HELP!!!!!! anyone. The type of lichen planus I have is not virus related.

Jump to this post

Hi,
I concur with Marianne. Check your vitamins D also. My cancer was a result of lichen planus. In the inside of my right cheek. After surgery, it disappeared in my mouth, though I have flair ups in my private parts, but very rearly now. I keep working on my vitamin D, which I was deficient for a long time, and I take an EZC Pak every other month to support my immune system. It is a 5-day tapered treatment that you can buy in Amazon, and I recommend it to everybody. It is echinacea, zinc and C. I give it to my husband during flu season, and to my grown up children as well.

REPLY
@lisalucier

Hi, @elizabethbryant — your oral lichen planus sounds painful and challenging with difficulties chewing your food. I'm sorry to hear that stress from a family emergency has caused a problem that had gotten a lot better to flare again.

I've moved your post here, because I thought that other members with any type of oral lichen planus would be of help to you and may have thoughts on what could provide relief.

Has your ENT had any suggestions for you on how to manage the painful talking and chewing you are experiencing, @elizabethbryant?

Jump to this post

Hi @elizabethbryant I had the same condition and the same result. Have not been aware of lichen planus since my cancer surgeries but remember how painful it used to be. The only relief was gained from steroids which have their own dangers. I hear what you are saying about stress bringing some of these horrible conditions to the fore and it's good that we can discuss something or anything that can relieve lichen planus.

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I have had erosive oral lichen planus for about 15 years. I live in a rural area in Wisconsin. No one knows a thing about it or how to treat it. My health care insurance won't cover it's treatment as they say it's dental and the dental insurance wont cover any treatment as they say it's medical. At one point I had a steroid rinse I used but even with insurance it was $50 for a two week supply of which I could not afford. About 5 years after my diagnosis by an oral surgeon that I had to pay for myself dispute having insurance, I developed bladder cancer which I have been fighting for almost 10 years now. I'm starting to lose that battle too. I find the health care in America leaving a bit to be desired. Interesting, is that I work in surgery where I am exposed to many chemicals as well as cautery plume daily .

REPLY
@elizabethbryant

I have Oral Lichen Planus which is the immune system attacking tissue under the tongue. The Lichen Planus spread when I was under stress in the
last 4 weeks and has anyone heard of a cure for this condition. I had this under my tongue on the right side in 2016 and it turned into cancer.
When we had a family emergency, my children nor I realized the stress would create lichen planus on the left side under tongue, It has become
to painful to talk or chew food. I was doing great until the stress hit, really getting better as unbelievable as it was to the doctor. ENT Surgeon.
HELP!!!!!! anyone. The type of lichen planus I have is not virus related.

Jump to this post

Thank you I ordered from Swanson 50 mg.

REPLY
@elizabethbryant

I have Oral Lichen Planus which is the immune system attacking tissue under the tongue. The Lichen Planus spread when I was under stress in the
last 4 weeks and has anyone heard of a cure for this condition. I had this under my tongue on the right side in 2016 and it turned into cancer.
When we had a family emergency, my children nor I realized the stress would create lichen planus on the left side under tongue, It has become
to painful to talk or chew food. I was doing great until the stress hit, really getting better as unbelievable as it was to the doctor. ENT Surgeon.
HELP!!!!!! anyone. The type of lichen planus I have is not virus related.

Jump to this post

Thank you I will order the Pak this evening…….Thank you so very much.

REPLY

Use the Budwig Protocol (use fresh BABY KALE as the green) food grade Franchincense drops in your water, Now ENT is using anti rejection drugs,
but one increases the risk of cancer. I have used steroid creams with little affect it thins the tissue. I was almost pain free until I hit a bump of stress
which caused it to spread. NEVER eat anything but a sweet potatoe that turns to sugar. SUGAR is out. Rid your body of acid.
I wish the person on this site that had a cream her husband used, from Tuffs could find from her pharmacy what the name of the cream was.

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