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← Return to Erosive oral lichen planus
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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!!!
Replies to "No, it really hasn't helped, but I'll try anything! This has been going on for almost..."
@mskatrina12 I’m so glad @johnbishop was able to give you some good information. I don’t have erosive oral lichen planus but i do have another autoimmune disease that affects my brain. I take prednisone and Mycophenolate and I’m 73 yo. I know that they are immunosuppressants so i take care to protect myself. I always wear a mask when I’m out and I’m extra careful on airplanes (I’ve been to see my 98yo mother twice since covid started). Was your mother vaccinated? Talk to the staff at the care facility to find out the vaccination rates of the staff and patients. Also tell them that you are on these drugs so need to be very careful. Is your town and/or county controlling the pandemic? You need to quietly sit down and consider everything. Yes, the medications for you are very important, just like the vaccines are. Then you can wear your mask and safely visit your mom.
I was also encourage to get the booster shot and had no reactions. I know that you’re nervous as heck because i am, too. I’m able to talk with some friends and others, not. I’m sorry you don’t have friends who will listen .
@mskatrina12 , i know you can do this. It’s hard. I’m here whenever you want to talk.
P.S. as i was typing this, my phone timer went off telling me it was time to take Mycophenolate! Yes, there are side effects, but…..
Would getting a second opinion help you to feel better? Is there a university hospital that you could reach out to?
@mskatrina12
I am so sorry you are going through this and that I haven’t been online for so long. I was prescribed Prednisolone (sp?) swish for my mouth as well as Magic Mouthwash and most times that did the trick. When it did get too severe I was on a high dose prednisone taper and it was not pleasant. Since then my LP has spread everywhere but my nasal and ear cavities. I am on an immunosuppressant which scares me because of the risks but there’s nothing else. I am going to a teaching hospital and they have more experience than anyone I’ve seen before. Unfortunately they say mine is the most diverse case of LP they’ve seen. Now it’s affecting my nails, hair, etc.
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Sorry you haven't found much help from your doctors. I know that must be terribly frustrating. @wisgrama posted his success taking Dapsone in a post in this discussion in 2018 here https://connect.mayoclinic.org/comment/143775/. @wisgama saw a dermatologist at Mayo Rochester who provided a diagnosis of Lichen Planus and may be able to provide you with more details. Here's more information on Dapsone that you may want to discuss with your doctor.
"A patient with erosive lichen planus responded to therapy with dapsone after multiple therapeutic modalities had failed. The potential usefulness of..." -- Dapsone in the treatment of erosive lichen planus: https://pubmed.ncbi.nlm.nih.gov/3989015/
"Oral dapsone 200 mg daily for 16 weeks was tried on 52 adult patients, of whom 33 patients (males 17, femals 16) completed the study." --- Efficacy of Dapsone in Lichen Planus: https://pubmed.ncbi.nlm.nih.gov/28128157/