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germany2
@germany2

Posts: 4
Joined: Mar 20, 2017

Erosive oral lichen planus

Posted by @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

REPLY

Hello @germany2, Welcome to Mayo Connect. I’m sorry you have been struggling to find effective treatment for your condition and that it has progressed. Rochester Mayo Clinic would be a good place to go as they have experience dealing with rare conditions. If you would like to seek help from Mayo Clinic, please call one of our appointment offices. The contact information for Minnesota, Arizona and Florida can be found here http://mayocl.in/1mtmR63.

It might be worth a phone call to see if they have a doctor who is familiar with the treatments for erosive oral lichen planus. Whatever you decide, don’t give up hope and keep being a strong advocate for yourself.

Mayo Clinic website does have some information on oral lichen planus here – http://mayocl.in/2n0DeJE

John

Hello @germany2,

I’d like to add my welcome, and introduce you to Connect members who have discussed lichen planus. Please meet @lindylou, @elizabethbryant, @loli, @alpaca, @skaryna, @cmtg, @sheetrock0131, @riverqueen1305, @callyrae, @shooter, @dkap.

I’m tagging @mouser, @firelady, @swb45, @lisakh, @nturner, who did post about lichen planus in the past and and I hope they return to provide their insights.

In addition we have a few discussions that might interest you:
I have Lichen Planopilaris: http://mayocl.in/2mliPlb
Oral cancer and Severe oral dysplasia: http://mayocl.in/2n6NykZ
Head and neck cancer: http://mayocl.in/2nWiwK0
Treating Oral Lichen Planus, (Mayo Clinic News Network): http://mayocl.in/2mlhBGQ

@germany2, what do you do to get relief from symptoms? Have your doctors discussed any immune response medicines that may help?

@germy2 Hi, I am so glad I found you. I have lichen planus and my teeth have started to ache.
Severe lichen planus should be looked at least every 3 months and biopsys done. It is alarming
the medical care that you have received, I will not consider Vanderbilt. My errosive lichen planus turned
into cancer. You must be biopsyed. I would suggest John Hopkins ENT or Boston Mass. Hosptial
Dr. Jermy Richmon. who performed my oral cancer surgery from errosive lichen planus.
I will see a speclist in oral issues next week recommended by Dr. Richmon. Ten hours by train. I will keep you posted.
I am not good at using this site and haven’t found a lot of medical information. It is good that
we can share what we have found from various hospitals. Thank you so very much for sharing
I had considered Vanderbilt but now that is out. Thank you so very very much, this is how we
help. I hope I can help you after visiting a specialist in lichen planus. Eliz.

@elizabethbryant

@germy2 Hi, I am so glad I found you. I have lichen planus and my teeth have started to ache.
Severe lichen planus should be looked at least every 3 months and biopsys done. It is alarming
the medical care that you have received, I will not consider Vanderbilt. My errosive lichen planus turned
into cancer. You must be biopsyed. I would suggest John Hopkins ENT or Boston Mass. Hosptial
Dr. Jermy Richmon. who performed my oral cancer surgery from errosive lichen planus.
I will see a speclist in oral issues next week recommended by Dr. Richmon. Ten hours by train. I will keep you posted.
I am not good at using this site and haven’t found a lot of medical information. It is good that
we can share what we have found from various hospitals. Thank you so very much for sharing
I had considered Vanderbilt but now that is out. Thank you so very very much, this is how we
help. I hope I can help you after visiting a specialist in lichen planus. Eliz.

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Hi,
My name is Loli and my lichen planus developed into cancer. I had it in my cheek. I recommend you have a good dentist monitor yours; but as you might know, this is an immune system deficiency, so I recommend you work on your immune system. Start by checking your vitamin D. I have found that all of us who have had some kind of mouth cancer, also share a deficit in the vitamin D department. Find out everything you can about busting your immune system: diet, vitamins, etc. Not all lichen planus’ turn into cancer. Only about one %. As far as confort for your mouth, I cannot share a lot, because my condition was never painful, but I know from other people, that it flairs from time to time, and that they have some periods that it calms down. Watch what you eat, and stay away from things that exacerbate it. It breaks my heart that you have to go through this. I have a picture of a 4 year old cancer girl in my desk. I look at it every day, and then I give thanks to God that that girl wasn’t me, and I find ways to help others and help myself.
Love, Loli

I understand your frustration and I’m sorry you have to deal with this. After four years of this pain, 12 doctors, 5 biopsies and a 40 pound weight loss the only relief I’ve found is don’t eat anything hot or cold or that needs chewing, use kid’s watermelon toothpaste and Motrin helps with my pain more than the prescription pain relievers. I’ve heard of people that have had this problem just go away. I will wish that for both of us. A few have found improvement with vitamin B12 and D. I’m going to give B12 a shot and have already started on D. If there is any improvement, I’ll let you know. If anyone discovers a doctor in Michigan that that has any experience with this issue, please advise, and good luck to you.

Yes, I have had this lichen planus since 2013, the way you handle stress has a large part in starting this condition and I believe it starts in the stomach at least mine did. I started using the anti yeast prescription pills and that helps. Vitamin 12 1,000 mg and liquid Vitamin B’s help also.
Vitamin D 3 is important your doctor can give you Vitamin D in 50,000 units by prescription and then fall back to Vitamin D-3 Swanson.
My lichen planus is located under one side of my tongue and is raw. I found something that cools it down immediately “Dale Audrey
Cool Mint Ayurvedic Oral Pulling Rinse.” I carry some in the small bottle in my purse.
Toothpaste would be “Biotene” Don’t eat any processed foods. Only organic foods and NO sugar. only Truvia.
I will see a doctor in MD on Wed. so I will post end of week how that goes. I did not know that I also had a parotid salvia tumor
it was discovered in an unrelated scan from the errosive lichen planus that turned into cancer.
Erosive lichen planus should be checked every 3 months. It can turn to cancer quickly. Mine was stage 1.
I am working on the stress reduction with whatever it takes after the awful tongue cancer surgery.

What resources would Mayo Clinic-MN have for evaluating L.P.? I have had to educate my local health care providers on the condition. At this point I would like to deal with a specialist instead of working my way up through the health care hierarchy. I have oral and vaginal involvement and now I suspect esophageal issues. I’ve dealt with this for about 4 years and I’m still waiting for the spontaneous remission!

Liked by ayesha7

Hello @jp53,

My sincere apologies for the delay in replying, but I’d like to extend a warm welcome to Connect, and thank you for joining the community. You may notice that I moved your post and combined it with this existing discussion on Lichen Planus (LP) I did this because I thought it would be beneficial for you to be introduced to the many members who have discussed much of what you are experiencing.
If you are replying by email, I suggest clicking on VIEW & REPLY so that you can read through some of the earlier messages and meet some of our other members talking about their or their or their loved ones’ experiences.

I’m also tagging @jshdma Mentor @alpaca @cmtg @skaryna @riverqueen1305, and Mentor @alpaca, as they may also be able to share more insights about their experiences with LP.

Here is some information from Mayo Clinic about oral LP: https://www.mayoclinic.org/diseases-conditions/oral-lichen-planus/symptoms-causes/syc-20350869

@jp53, can you tell us a bit more about your experience with lichen planus — if you’re comfortable doing so of course? How did you get diagnosed?

@jp53

What resources would Mayo Clinic-MN have for evaluating L.P.? I have had to educate my local health care providers on the condition. At this point I would like to deal with a specialist instead of working my way up through the health care hierarchy. I have oral and vaginal involvement and now I suspect esophageal issues. I’ve dealt with this for about 4 years and I’m still waiting for the spontaneous remission!

Jump to this post

It’s a tough one, @jp53. I had it for years before a lesion on my tongue turned cancerous.Don’t be alarmed because it is quite rare. I had the more generalised, stripy lichen planus in my mouth which came and went and then it seemed to settle in one spot – left lateral tongue. I was told it would go way by itself. The only thing that gave me relief was steroid medication but you can’t take that for too long. I saw an oral surgeon and a dermatologist who couldn’t help me.
Since cancer I have had no more trouble which makes me think the isolated lesion may not have been lichen planus but cancer all along. I’m still confused about this. I have heard of people with lichen planus of the skin having light treatment with some success but LP on the mucosa – I’m not sure about the latest treatments.

@jp53

What resources would Mayo Clinic-MN have for evaluating L.P.? I have had to educate my local health care providers on the condition. At this point I would like to deal with a specialist instead of working my way up through the health care hierarchy. I have oral and vaginal involvement and now I suspect esophageal issues. I’ve dealt with this for about 4 years and I’m still waiting for the spontaneous remission!

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Right, there is no reasonable treatment for this. It can be (is) quite miserable, especially when you consider that there is no hope of its going away. What was done to treat the cancer?

@jp53

What resources would Mayo Clinic-MN have for evaluating L.P.? I have had to educate my local health care providers on the condition. At this point I would like to deal with a specialist instead of working my way up through the health care hierarchy. I have oral and vaginal involvement and now I suspect esophageal issues. I’ve dealt with this for about 4 years and I’m still waiting for the spontaneous remission!

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I had a partial glossectomy and eventually radiation. The nature of the squamous cell carcinoma was that further primaries could arise and they have. But I’m okay – scarred, a bit disfigured, limited eating options but I have a reasonable quality of life.

@jp53

What resources would Mayo Clinic-MN have for evaluating L.P.? I have had to educate my local health care providers on the condition. At this point I would like to deal with a specialist instead of working my way up through the health care hierarchy. I have oral and vaginal involvement and now I suspect esophageal issues. I’ve dealt with this for about 4 years and I’m still waiting for the spontaneous remission!

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I went to Rochester over 30 years ago to a dermatologist and had a biopsy of my tongue. The diagnosis was Lichun Planus. I had to have blood work done and then was put on a pill called Dapsone. I was told it was used for Leprosy. Had to have frequent blood counts. Don’t remember how long I took it. Several weeks I think. I have been in remission now for many years. There is another rare condition called Bechets disease that can cause vaginal and oral ulcers. Actually as a child I remember being taken to doctor and having them burned out with silver nitrate sticks. As an adult had a series of 3 smallpox vacinne given as a shot. It worked for a year and then would go back for another shot. It worked great for 4 years until they said the FAA banned it and they couldn’t get the vaccine anymore. That was when I was sent to Rochester. I told the Dr. he had to do something. That should be a good place to go. A Dermatologist for a biopsy. Hope you get some relief. Elinor

@kanaazpereira

Hello @jp53,

My sincere apologies for the delay in replying, but I’d like to extend a warm welcome to Connect, and thank you for joining the community. You may notice that I moved your post and combined it with this existing discussion on Lichen Planus (LP) I did this because I thought it would be beneficial for you to be introduced to the many members who have discussed much of what you are experiencing.
If you are replying by email, I suggest clicking on VIEW & REPLY so that you can read through some of the earlier messages and meet some of our other members talking about their or their or their loved ones’ experiences.

I’m also tagging @jshdma Mentor @alpaca @cmtg @skaryna @riverqueen1305, and Mentor @alpaca, as they may also be able to share more insights about their experiences with LP.

Here is some information from Mayo Clinic about oral LP: https://www.mayoclinic.org/diseases-conditions/oral-lichen-planus/symptoms-causes/syc-20350869

@jp53, can you tell us a bit more about your experience with lichen planus — if you’re comfortable doing so of course? How did you get diagnosed?

Jump to this post

Jp53. Read my post above from wisgrama. Got an eventual cure from Dermatologist at Mayo Rochester

@jp53

What resources would Mayo Clinic-MN have for evaluating L.P.? I have had to educate my local health care providers on the condition. At this point I would like to deal with a specialist instead of working my way up through the health care hierarchy. I have oral and vaginal involvement and now I suspect esophageal issues. I’ve dealt with this for about 4 years and I’m still waiting for the spontaneous remission!

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That is amazing. When I had lichen planus I researched treatments like that (not sure about the actual name of the meds I found) but no one was brave enough to try them with me. I am so glad there is a treatment for oral lichen planus.

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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