Erosive oral lichen planus

@mskatrina12. Nooooo, you're not a wimp, Katrina. OLP is no joke. I know your frustration because I know so well how you are suffering. Me too, me too!
My doctors are very frustrated as well because nothing they've tried has worked. Like you, I'm forever researching online and taking notes on anything I haven't yet tried. I hope you'll tell your dermatologist of all the nasty side effects you're dealing with. You shouldn't have to put up with that kind of misery. The doc will likely cut you down, or off, those two meds and try something else.
You're just a young chick at 70. Please don't wish your life away. I'm 86, and despite everything, I'd like to live to at least 97 and then re-negotiate!! 🤣
Maybe my upcoming biopsy will reveal something new that will shed a light on this miserable condition. My mantra has always been "Under all this manure, there must be a PONY somewhere!"
My very best to you, Katrina.
Keep on truckin' !
❤ Laurie

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I like that hopeful idiom Laurie. Although, the cynical side of me knows that one horse poops 50 or more pounds of manure every day. But, you’re also correct there’s always a horse 🐎 nearby!

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@athenalee . Oh, you cynic, you! Lol. (I love horses!) 🐎 Thanks for your comment, Athena.

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I’d say I admire horses, but find them a bit frightening. But as a compost specialist, their manure and bedding together makes for perfect compost ingredients!

How’s that for positivity Laurie?!

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Hello @lcr, I thought I would post your question from the PMR and the new Shingles vaccine discussion here so members in this discussion can share their experience and may be able to answer the question -- Does the tissue eroded by erosive oral lichen planus regenerate if your OLP goes into remission, or is the tissue lost forever?

Here is some recent information on the topic --- Lichen Planus Erosive Form: https://www.ncbi.nlm.nih.gov/books/NBK560700/

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No, it really hasn't helped, but I'll try anything! This has been going on for almost 2 years, but it was just recently diagnosed. In the beginning I was staying home, staying away from all Doctor & Dentist offices due to Covid, and then once I began to venture out all I got was "Try this & come back in a month." "Now try this & come back in a month." "Hmm...Wonder what it might be? Maybe I'll send you to Dr. XXX." Well, 2 months later I had an appointment with Dr. XXX, and they then called & rescheduled it, but in the mean time another Dr. had me on Prednisone for 2 months, which had all kinds of crazy side effects. Then Dr. XXX did tests, told me briefly what I had, (Erosive Oral Lichen Planus), DIDN'T tell me that there's no cure, (Yippee!), kept me on Prednisone for a 3rd month and added Mycophenolate, which has a whole new set of crazy side effects, (DO I REALLY WANT TO DO THIS???), I haven't been able to eat ANYTHING but vanilla ice cream for over 6 months, because it freezes my mouth so I don't feel the pain, and there's no nutrition in vanilla ice cream. They now have me drinking vanilla Ensure, which burns like fire, but I drink it anyway....I'm terrified of taking the Prednisone & Mycophenolate (couldn't possibly be a worse time to be suppressing a persons immune system -- I'm 70 years old and visit my 97 year old mother in a long term care facility once a week. I've had 2 Covid vaccs, but can't get the booster because of the immunosuppressive drugs...). I'm also scared to NOT take the drugs, because I've read that this disease often causes oral cancer, especially in those over 65, and quite often on the side of the tongue --- and the side of the tongue is where I have it the worst. My Dr. hasn't told me any of this stuff yet. She's a Dermatolagist, very young, and probably excited to have an exciting case like this to deal with -- I hope! I've only seen her twice, so far...another "do this, and I'll see you in a month". Do they realize that a month is THIRTY DAYS??? Anyway, the more I read about this whole thing, the more terrified I become. Do I take the drugs, let them suppress my immune system, let whatever is hiding inside of me or whatever I run into outside of me get ahold of me and finish me off........or do I NOT take the drugs, let the disease continue to destroy the inside of my mouth, possibly travel to the esophagus, nose, eyes, or maybe just cause cancer and get it over with sooner? No one to talk to. No one to help me figure this out. Stress makes it worse. WooHoo!!!

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I have had OLP for a year. Had been under unusual stress before this with a hip replacement for osteoarthritis, my first-ever crown and a severe laceration of my finger with a Tdap shot given. I already have severe periodontal disease for 20+years. Since the OLP, i have continued gum erosion and constant hip discomfort. I have seen four doctors, a GP, dermatologist, ENT and rheumatologist. I have had allergy testing, hep C testing, bacterial and fungal cultures, all negative. I have been on steroid paste, prednisone for 2 weeks, tacrolimus and magic mouthwash for 4 months, steroid injections in each cheek and numerous home remedies. All this has made me extremely anxious and nervous so i was put on Lexapro. My diet is greatly restricted, mouth burns and feels swollen, sores erupt occasionally, and lips are extremely dry and puffy. Praying it does not spread or turn to cancer. I am so grateful i found all of you folks! Finally, someone knows what i'm talking about. I am not alone. Thank you
Audrey Joy

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