Erosive oral lichen planus

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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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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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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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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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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