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Erosive oral lichen planus
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
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I cannot believe I have this on top of all my chronic pain. But I do. Now I must find a way through. My acupuncturist recommended this tincture and it feels so good and healing. Check it out it is called Spilanthes
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3 ReactionsI use children’s toothpaste. The 3 pack from Costco. Every other brand I tried was too painful
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4 Reactions@suecutuli But doesn't it contain alcohol, which is not for us OLP sufferers?
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1 Reaction@suecutuli YES you are right it does. I am new to OLP -6 months in,
I definitely do not know all the rights and wrongs yet! But this feels good and sometimes that’s all that matters
To me.
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2 ReactionsHave you been referred to a dermatologist? I 💯 understand what your going through through.
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3 ReactionsSounds like you have systemic lichen planus. From my research, Mayo Clinic is the best for treating LP.
I too, have oral LP, esophageal LP which has impacted my eyes & ears. I encourage you to seek a healthcare system who can provide a multidisciplinary approach otherwise you will be trying to coordinate your own care between dermatology, GI, ophthalmology, ENT & so on.
I wish you much success in finding the right providers & don’t stop advocating for yourself!
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3 ReactionsAlso, I was given dexamethasone to swish in when my gums are inflamed - it helps! I was also given clobetasol gel, which I only use orally when I have erosive areas.
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2 ReactionsI have finally found relief from an oral surgeon. He prescribed clobetasol/tacrolimus .05mg/.05mg. It’s a troche that I dissolve in my mouth 2x a day.
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4 Reactions@cgrasse54 That’s wonderful! Do you get the medicine through his clinic or is it prescribed? I think many others would like to know!
Hi. I have erosive oral lichen planus and an infectious disease specialist made rounds to my hospital stay. He prescribed Valcyclovire and diflucan. I have been in remission for 18 months. My oral pathologist is stumped why this works, but it does for me. Good luck
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