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

Hello @gerrmany2 I have had Lichen Planus since 1982 (37 years) discovered when a biopsy was done at the Oral Medical Stomatology Department at UCSF in San Francisco. I have been on Prednisone systemically off and on for most of my life since that date. With the advent of Topical steroid Gels I have been able to treat the lesions. I now have mouth pieces that I can put the gel in and wear for 20-30 minutes twice a day. I cannot tolerate toothpaste, floss, or food with mint, chili spices, or cinnamon or alcohol. Recently after a particularly difficult bout of lesions all over my mouth, I had to have shots of cortisone on either side of my cheeks, was told to take Tumeric with Bioprin 8000mg divided three times a day with food. I also have had vaginal and fingernail OLP. There is no cure but the hope is to keep the symptoms at bay and to see an Oral Medicin Dr. and a dermotologist that has some interest and knowledge of this autoimmune disease. I had to travel from Arizona to San Francisco to see an Oral Medicine Dr who was a resident at UCSF where I was diagnosed who told me to avoid ALL Dairy products including any protein bi-product contained in canned or prepared foods. Eliminating all Dairy has provided some relief of the fingernail LP but it is too early to tell wheather oral or vaginal LP respond to this protocol. The key for me is to stay ahead of the pain, be sure you see an Oral Medical specialist. It has been my good fortune to have lived in two cities where there has been and Oral medicine clinic affilatied with a Medical School with a Stomatology clinic who watch me carefully so that early signs of cancer can be found. Where I live now in Arizona, I too am challenged as it does not seem to be anyone who to knows or treats OLP. Mayo Clinic in Rochester it appears does have expertise and interest, in OLP but for me it is too far to go. It is always a challenge but you are your best advocate. Since OLP patients are only 1% of the population, it seems that my best medical care has been from physicians who have experience with a family member so they have a personal interest in helping. Good luck, you can live a long life living mostly pain free, but you have to be your own advocate. Best of Luck Maryz

Liked by loli

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Does anyone have this? It’s driving me crazy. Very itchy.

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Hi @wendyf and welcome to Connect. You may have noticed I moved your post to this existing discussion on lichen planus so that you can connect with others who have experience with this condition. Simply click VIEW & REPLY in your email notification to get to your post.

This must be frustrating to feel so itchy.

I wanted to introduce you to fellow Connect members, @maryz @jshdma and @march13 as they all have experience with lichen planus and may be able to offer you support.

Back to you @wendyf how are you currently treating the lichen planus?

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@maryz

Hello @gerrmany2 I have had Lichen Planus since 1982 (37 years) discovered when a biopsy was done at the Oral Medical Stomatology Department at UCSF in San Francisco. I have been on Prednisone systemically off and on for most of my life since that date. With the advent of Topical steroid Gels I have been able to treat the lesions. I now have mouth pieces that I can put the gel in and wear for 20-30 minutes twice a day. I cannot tolerate toothpaste, floss, or food with mint, chili spices, or cinnamon or alcohol. Recently after a particularly difficult bout of lesions all over my mouth, I had to have shots of cortisone on either side of my cheeks, was told to take Tumeric with Bioprin 8000mg divided three times a day with food. I also have had vaginal and fingernail OLP. There is no cure but the hope is to keep the symptoms at bay and to see an Oral Medicin Dr. and a dermotologist that has some interest and knowledge of this autoimmune disease. I had to travel from Arizona to San Francisco to see an Oral Medicine Dr who was a resident at UCSF where I was diagnosed who told me to avoid ALL Dairy products including any protein bi-product contained in canned or prepared foods. Eliminating all Dairy has provided some relief of the fingernail LP but it is too early to tell wheather oral or vaginal LP respond to this protocol. The key for me is to stay ahead of the pain, be sure you see an Oral Medical specialist. It has been my good fortune to have lived in two cities where there has been and Oral medicine clinic affilatied with a Medical School with a Stomatology clinic who watch me carefully so that early signs of cancer can be found. Where I live now in Arizona, I too am challenged as it does not seem to be anyone who to knows or treats OLP. Mayo Clinic in Rochester it appears does have expertise and interest, in OLP but for me it is too far to go. It is always a challenge but you are your best advocate. Since OLP patients are only 1% of the population, it seems that my best medical care has been from physicians who have experience with a family member so they have a personal interest in helping. Good luck, you can live a long life living mostly pain free, but you have to be your own advocate. Best of Luck Maryz

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Interesting post, @maryz You are indeed lucky to have had oral medicine specialists in the cities you have lived in and you've taught me a new term, stomatology. I had OLP before my oral cancer and still have a mild form of it. Very interesting about the fingernails. Would you mind if I shared your post anonymously with an oral medicine specialist here in New Zealand. She is not my doctor but she and I are on the same co-design committee at the hospital. I'm still trying to make sense of OLP and would like to discuss it with her. Before my ulcerative OLP lesion was diagnosed as cancer some years ago, I lived in constant pain with that sore tongue.

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@maryz

Hello @gerrmany2 I have had Lichen Planus since 1982 (37 years) discovered when a biopsy was done at the Oral Medical Stomatology Department at UCSF in San Francisco. I have been on Prednisone systemically off and on for most of my life since that date. With the advent of Topical steroid Gels I have been able to treat the lesions. I now have mouth pieces that I can put the gel in and wear for 20-30 minutes twice a day. I cannot tolerate toothpaste, floss, or food with mint, chili spices, or cinnamon or alcohol. Recently after a particularly difficult bout of lesions all over my mouth, I had to have shots of cortisone on either side of my cheeks, was told to take Tumeric with Bioprin 8000mg divided three times a day with food. I also have had vaginal and fingernail OLP. There is no cure but the hope is to keep the symptoms at bay and to see an Oral Medicin Dr. and a dermotologist that has some interest and knowledge of this autoimmune disease. I had to travel from Arizona to San Francisco to see an Oral Medicine Dr who was a resident at UCSF where I was diagnosed who told me to avoid ALL Dairy products including any protein bi-product contained in canned or prepared foods. Eliminating all Dairy has provided some relief of the fingernail LP but it is too early to tell wheather oral or vaginal LP respond to this protocol. The key for me is to stay ahead of the pain, be sure you see an Oral Medical specialist. It has been my good fortune to have lived in two cities where there has been and Oral medicine clinic affilatied with a Medical School with a Stomatology clinic who watch me carefully so that early signs of cancer can be found. Where I live now in Arizona, I too am challenged as it does not seem to be anyone who to knows or treats OLP. Mayo Clinic in Rochester it appears does have expertise and interest, in OLP but for me it is too far to go. It is always a challenge but you are your best advocate. Since OLP patients are only 1% of the population, it seems that my best medical care has been from physicians who have experience with a family member so they have a personal interest in helping. Good luck, you can live a long life living mostly pain free, but you have to be your own advocate. Best of Luck Maryz

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Thank you for the information. I have OLP which turned into cancer and was removed six years ago. I also have LP in my nails and vagina, with very rare flares and no pain or itch. I fear that it will come back one day (as cancer), so I collect all the info that is shared in this site Thank you for sharing. Loli

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@maryz

Hello @gerrmany2 I have had Lichen Planus since 1982 (37 years) discovered when a biopsy was done at the Oral Medical Stomatology Department at UCSF in San Francisco. I have been on Prednisone systemically off and on for most of my life since that date. With the advent of Topical steroid Gels I have been able to treat the lesions. I now have mouth pieces that I can put the gel in and wear for 20-30 minutes twice a day. I cannot tolerate toothpaste, floss, or food with mint, chili spices, or cinnamon or alcohol. Recently after a particularly difficult bout of lesions all over my mouth, I had to have shots of cortisone on either side of my cheeks, was told to take Tumeric with Bioprin 8000mg divided three times a day with food. I also have had vaginal and fingernail OLP. There is no cure but the hope is to keep the symptoms at bay and to see an Oral Medicin Dr. and a dermotologist that has some interest and knowledge of this autoimmune disease. I had to travel from Arizona to San Francisco to see an Oral Medicine Dr who was a resident at UCSF where I was diagnosed who told me to avoid ALL Dairy products including any protein bi-product contained in canned or prepared foods. Eliminating all Dairy has provided some relief of the fingernail LP but it is too early to tell wheather oral or vaginal LP respond to this protocol. The key for me is to stay ahead of the pain, be sure you see an Oral Medical specialist. It has been my good fortune to have lived in two cities where there has been and Oral medicine clinic affilatied with a Medical School with a Stomatology clinic who watch me carefully so that early signs of cancer can be found. Where I live now in Arizona, I too am challenged as it does not seem to be anyone who to knows or treats OLP. Mayo Clinic in Rochester it appears does have expertise and interest, in OLP but for me it is too far to go. It is always a challenge but you are your best advocate. Since OLP patients are only 1% of the population, it seems that my best medical care has been from physicians who have experience with a family member so they have a personal interest in helping. Good luck, you can live a long life living mostly pain free, but you have to be your own advocate. Best of Luck Maryz

Jump to this post

First of all, thank you for being so thorough with the process that has worked for you. I’m new here and although I haven’t been diagnosed with LP yet I’m sure that I have it. I do a lot of research and my years of college study has always been in the medical arena. Anyway I have OLP and vaginal LP. I mentioned my symptoms and the possibility of me having LP to my OBGYN, only to be told “That’s an old lady’s disease.” I apologize to anyone that’s offended by that statement because I’m offended by it as well. I have other conditions that are considered to be “Geriatric conditions” so I wish they’d stop saying things like that. Anyway, I have been having really bad oral episodes lately which had me do more research on LP. I was treated with Whitecars Solution w/Nystatin. I was given two prescriptions for 900mL and was to swish and swallow 15mL 4x/day. Of course it wasn’t covered by my insurance (Medicare & Medicaid) so it cost me a total of $300. I lost 10lbs before my mouth was well enough to eat. I’m 5’2 and usually around 125lbs so my pants we’re pretty loose afterwards. I live in a small southern town now, so I’m having the hardest time getting properly diagnosed and treated for LP. As far as the vaginal LP they have for over a decade treated me for folliculitis. It’s been tested and proven to NOT be a herpatic rash. I’m just very frustrated with all of this. I’m 39 with 4 children and I’m disabled with cervical spinal stenosis that has moved down into the upper half of my thoracic region. I also have bulging discs in L-3 to S-1. Add in the CFS and sciatica, I’m in pain everyday of my life. I’ve seen more doctors and specialists than I care to admit to, yet I ALWAYS get contradictory reports. I’m a completely exhausted woman at this point and I’m just trying to find some answers anywhere that I can. So that’s why I’m here! I’ve found that talking to other people over the years have given me a lot more insight than the majority of the health care providers I’ve come across. They like to place everyone in what I call a cookie cutter frame because “I went to school and I have the degree” and my books state my diagnosis is correct. They don’t consider people as individuals anymore!

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@maryz You have been having a hard time! It seems that thrush (candida) and OLP go hand in hand. Very painful.

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@mrsdavis1

First of all, thank you for being so thorough with the process that has worked for you. I’m new here and although I haven’t been diagnosed with LP yet I’m sure that I have it. I do a lot of research and my years of college study has always been in the medical arena. Anyway I have OLP and vaginal LP. I mentioned my symptoms and the possibility of me having LP to my OBGYN, only to be told “That’s an old lady’s disease.” I apologize to anyone that’s offended by that statement because I’m offended by it as well. I have other conditions that are considered to be “Geriatric conditions” so I wish they’d stop saying things like that. Anyway, I have been having really bad oral episodes lately which had me do more research on LP. I was treated with Whitecars Solution w/Nystatin. I was given two prescriptions for 900mL and was to swish and swallow 15mL 4x/day. Of course it wasn’t covered by my insurance (Medicare & Medicaid) so it cost me a total of $300. I lost 10lbs before my mouth was well enough to eat. I’m 5’2 and usually around 125lbs so my pants we’re pretty loose afterwards. I live in a small southern town now, so I’m having the hardest time getting properly diagnosed and treated for LP. As far as the vaginal LP they have for over a decade treated me for folliculitis. It’s been tested and proven to NOT be a herpatic rash. I’m just very frustrated with all of this. I’m 39 with 4 children and I’m disabled with cervical spinal stenosis that has moved down into the upper half of my thoracic region. I also have bulging discs in L-3 to S-1. Add in the CFS and sciatica, I’m in pain everyday of my life. I’ve seen more doctors and specialists than I care to admit to, yet I ALWAYS get contradictory reports. I’m a completely exhausted woman at this point and I’m just trying to find some answers anywhere that I can. So that’s why I’m here! I’ve found that talking to other people over the years have given me a lot more insight than the majority of the health care providers I’ve come across. They like to place everyone in what I call a cookie cutter frame because “I went to school and I have the degree” and my books state my diagnosis is correct. They don’t consider people as individuals anymore!

Jump to this post

It is for sure a very challenging and sometimes when we have the pain of ELP it brings that tearful frustration. It seems to be considered a hysterical women’s disease. There was an article published in the New York Times this month. Here is the link. https://www.nytimes.com/2019/05/12/well/live/a-little-known-skin-disease-that-can-disrupt-peoples-sex-lives.html. Information in this article could well be what ended my marriage. These rare auto immune problems seem to be a mystery even to the medical community. At least Mayo provides a forum to learn what may work. If it worked for others! If the link I provided is blocked just search for the New York Times article from 5/12/18 an article by Jane E Brody. Heading is A Little-known Skin Disease That Can Disrupt People’s Sex Lives. It is a provocative but true statement but so much more. People have been responding with their medical experiences. Good luck. maryz

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@maryz

It is for sure a very challenging and sometimes when we have the pain of ELP it brings that tearful frustration. It seems to be considered a hysterical women’s disease. There was an article published in the New York Times this month. Here is the link. https://www.nytimes.com/2019/05/12/well/live/a-little-known-skin-disease-that-can-disrupt-peoples-sex-lives.html. Information in this article could well be what ended my marriage. These rare auto immune problems seem to be a mystery even to the medical community. At least Mayo provides a forum to learn what may work. If it worked for others! If the link I provided is blocked just search for the New York Times article from 5/12/18 an article by Jane E Brody. Heading is A Little-known Skin Disease That Can Disrupt People’s Sex Lives. It is a provocative but true statement but so much more. People have been responding with their medical experiences. Good luck. maryz

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Thank you! I just finished reading the article and yes I can totally relate to the issues it caused in my marriage. But at this moment it’s not as big of an issue because my husband has CML Leukemia. The chemotherapy is wrecking havoc on his body as well as his mind and spirit.

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@mrsdavis1

Thank you! I just finished reading the article and yes I can totally relate to the issues it caused in my marriage. But at this moment it’s not as big of an issue because my husband has CML Leukemia. The chemotherapy is wrecking havoc on his body as well as his mind and spirit.

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Oh, my I am very sorry to learn that. Please take good care of yourself too! Maryz

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@maryz

Oh, my I am very sorry to learn that. Please take good care of yourself too! Maryz

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We’re both handling our health the best that we can right now. Thank you again for your time and input!

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OLP is treated with steroids. They usually work.

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@mrsdavis1

First of all, thank you for being so thorough with the process that has worked for you. I’m new here and although I haven’t been diagnosed with LP yet I’m sure that I have it. I do a lot of research and my years of college study has always been in the medical arena. Anyway I have OLP and vaginal LP. I mentioned my symptoms and the possibility of me having LP to my OBGYN, only to be told “That’s an old lady’s disease.” I apologize to anyone that’s offended by that statement because I’m offended by it as well. I have other conditions that are considered to be “Geriatric conditions” so I wish they’d stop saying things like that. Anyway, I have been having really bad oral episodes lately which had me do more research on LP. I was treated with Whitecars Solution w/Nystatin. I was given two prescriptions for 900mL and was to swish and swallow 15mL 4x/day. Of course it wasn’t covered by my insurance (Medicare & Medicaid) so it cost me a total of $300. I lost 10lbs before my mouth was well enough to eat. I’m 5’2 and usually around 125lbs so my pants we’re pretty loose afterwards. I live in a small southern town now, so I’m having the hardest time getting properly diagnosed and treated for LP. As far as the vaginal LP they have for over a decade treated me for folliculitis. It’s been tested and proven to NOT be a herpatic rash. I’m just very frustrated with all of this. I’m 39 with 4 children and I’m disabled with cervical spinal stenosis that has moved down into the upper half of my thoracic region. I also have bulging discs in L-3 to S-1. Add in the CFS and sciatica, I’m in pain everyday of my life. I’ve seen more doctors and specialists than I care to admit to, yet I ALWAYS get contradictory reports. I’m a completely exhausted woman at this point and I’m just trying to find some answers anywhere that I can. So that’s why I’m here! I’ve found that talking to other people over the years have given me a lot more insight than the majority of the health care providers I’ve come across. They like to place everyone in what I call a cookie cutter frame because “I went to school and I have the degree” and my books state my diagnosis is correct. They don’t consider people as individuals anymore!

Jump to this post

Hello, @mrsdavis1 That all sounds so difficult! I’m so glad you found MayoClinicConnect. I’m a nurse and I agree, doctors don’t know everything. I read an article that said that they never learned about autoimmune disease because most are too new. Mine, included. Are you anywhere near the state university medical school? They have excellent doctors . One woman found a specialist dentist who diagnosed her. I sure hope you find something! Try large medical centers, medical schools, and rheumatologist. And look thru all the previous posts on OLP. Everyone has such good ideas. Be sure to let us know how you’re doing

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@becsbuddy

Hello, @mrsdavis1 That all sounds so difficult! I’m so glad you found MayoClinicConnect. I’m a nurse and I agree, doctors don’t know everything. I read an article that said that they never learned about autoimmune disease because most are too new. Mine, included. Are you anywhere near the state university medical school? They have excellent doctors . One woman found a specialist dentist who diagnosed her. I sure hope you find something! Try large medical centers, medical schools, and rheumatologist. And look thru all the previous posts on OLP. Everyone has such good ideas. Be sure to let us know how you’re doing

Jump to this post

Most of my specialists are practicing in a university medical center I hadn’t brought this up to them yet. I started with my OBGYN and the dentist but I will definitely fill them in and see if I can get some answers and relief. Thank you and I’ll keep you updated.

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To all of us suffering from Oral and the other Lichens, my heart goes out to you. I have been seeing a dental/Pathologist at our nearby medical college. She has been helping me with different meds but as with most of us, not a lot does the trick we want. ( for it to just go away) However we are still trying things and I am now taking a trouche 4 xs a day that I disolve in my mouth. This is treat my yeast like thingy that just started. Dr. says it from too much prednisone I was taking. I also use Triaminalone 0.5% ointment 2 x's a day for my OLP. It does seem to be helping, in that it keeps it from getting worse and is livable for me. Good luck to us all. Please everyone, keep us posted with all and any help you are getting. Prayers to you all.

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