← Return to Erosive oral lichen planus
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Autoimmune Diseases | Last Active: Jan 19 4:18pm | Replies (231)
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Replies to "Hello @mskatrina12, Welcome to Connect. Thanks for sharing how the Betamethasone Dipropionate ointment. It was great..."
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!!!