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Need Help with Severe Lichen Planus
Hello everyone, My mother finally got a diagnosis a little over three months ago by dermatologist after a year of suffering with severe Lichen Planus. she is finally on medication, but is still dealing with severe complications. What feels like I have taken her to every doctor I can think of I even made arrangements in December to take her to you up UF in Jacksonville, Florida we live in Daytona Beach. At the time UF kept passing the buck back to her oncologist saying it was her cancer coming back. She was diagnosed with non-Hopkins in 2022. Her oncologist has been doing scans and she is still in remission and was trying to figure out what was happening as well, in the beginning we were back-and-forth with different oral specialist and rheumatologist. I’ve been told by a few people that it was probably the cancer or the treatment that trigger this auto immune. she is highly sensitive to steroids, the steroids causing other complications and it does not take away any lesions or pain, she’s still in a lot of pain and pain medication doesn’t work. She’s on hydroxychloroquine that has calmed down things just a little but her jaw has been tight due to the pain and not being able to eat for over a year, her oncologist ordered a feeding tube in October. we recently saw a ENT said they didn’t think can do anything, but they did prescribe a medication that deals with inflammatory that they usually give to people with rosacea to see that would helpit call Doxycycline. I even have a consultation with a twilight dentistry on 20th to see if that could help. Because we also think this was triggered she needed to get teeth pulled out pulled after treatment, During treatment she had all these wisdom teeth come out. I’ve been hesitant to post something on this form for a while, but I feel I need to at this point so I’m reaching out I need to know if there’s anything I’m missing a specialist a different type of medication or treatment. I’m trying to compact this down if I wrote everything that She went through the last few years it would be a book.
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Sorry she is going through this. I clicked on this link because of lichen planus. I am dealing with a rash currently. My doctor thinks LP but I think maybe mites. To test the mite theory I tried permethrin cream which stopped the spread but not the original rash. So I tried ivermectin and after 2 days I still have the rash but the bumps have shrunk down to pin prick size.
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1 ReactionSorry to hear about your mom. I do understand how frustrated you are because you can’t help her more.
Toothpaste I was told to use Tom’s children, strawberry, flavored fluoride, free toothpaste. This has helped me greatly, and my mouth is not nearly as sore. One note it does not contain egg whites so it will not foam up like a lot of toothpaste will.
Spicy foods are not her friend as they will irritate the Lichen.
Mouthwash I don’t know much about as I don’t use them, but I would be extremely careful go to a health food store and maybe they have a children’s that is not as strong as the adult ones.
Keep a diary of your mom‘s mouth sores.
What foods that affect it also if she likes coffee, tea, or soda to see if that affects the lichen.
I am sure your mom is on some medication for this right now some gel or ointment that she could put on the sores in the mouth
I wish you both a very best. I know it’s not easy, but it’s important to keep a diary so when you go to the doctor, you take it with you I wish you the very best.
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2 ReactionsMy oral lichen planus improved after I switched to natural toothpastes without SLS and, for more severe flare-ups, using dexamethasone elixir (rinse 5 milliliters in the mouth for 2 minutes and expectorate, 4 times/day). Made a huge difference. Also, “magic mouthwash” can help with pain. Check with your pharmacist. Stress can be a huge trigger, as can GI issues.
I hope your mom can get some relief.
@minnesota10 thank you for information about the egg whites in toothpaste she have sensitivity to egg and several family member as well. I probably should’ve put an my original post that she’s barely having any food and when she does It is a non-dairy ice cream.
@ndmcl49 i’m gonna look into dexamethasone elixir. Trying magic mouthwash several times and it makes her sick It’s either mint, Benadryl or lidocaine. She uses act kids watermelon mouthwash because the mint in other mouthwash triggers it.