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

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

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?

@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

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.

@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

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

Please login or register to post a reply.