Oral Lichen Planus: What meds & treatments have worked for you?

Posted by hem1959 @hem1959, Sep 10 9:31am

Greetings from Virginia! I was recently diagnosed with oral lichen planus. I'm an RN but had never heard of this condition before. I've seen my dentist, a dermatologist and a periodontist and still don't feel I have a viable treatment plan.
This is what I've been prescribed so far: Clobetasol Propionate ointment, 0.05% by my dentist (my dermatologist told me this was way "too strong."
Dental paste, by my dermatologist, which is the most miserable stuff to apply EVER. I've tried all the tricks, but it always gets on my tongue and cheeks when I try to apply it only to my gums. It's GROSS.
Dexamethasone mouthwash by my periodontist, just recently. This is definitely the easiest product to use -- but I can't really tell if it's helping yet. It does contain 5% alcohol, which surprises me since alcohol is supposed to be avoided.
I would truly like to find some non-traditional meds or supplements and will try increasing vitamin D and will add B12 (I already take a B complex nightly). Has anyone had success with anything else? Apple cider vinegar, other supplements?

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parrot53 | @parrot53 | Sep 12 1:15pm

In reply to @muhlly "What are IVIG treatments? Also, doesn’t the clove burn?" + (show)

https://my.clevelandclinic.org/health/treatments/ivig-intravenous-immunoglobulin
Her doc is in CA and knows quite a bit about OLP

suecutuli | @suecutuli | Sep 13 11:42am

In reply to @JustinMcClanahan "Hello @hem1959, I would like to invite @suecutuli, @pacific2 and @ginala to this discussion to share..." + (show)

Hello - UGH!!! So I saw your request for my info but it is not good! I got a new mouthwash that was triamcinolone .1% oral rinse 2 weeks ago . It taste pretty bad but tolerable . However it really doesn’t work that well. I just went back to my clobetosol .05% swab and it seems to work better. When I first got diagnosed and used the medications as indicated and it went away in three days which was great. But it returned quickly. That’s when I got the mouthwash and thought it worked just ok. The problem is the many symptoms and it is definitely related to the stress I am under. I have blisters under my tongue and on the side of my cheeks- not all at the same time. Last night my gums were so very red
Swollen and sore it made
Me
Feel weak! I also have
A weird
Throat feeling- like im always on the verge of a sore throat. I used the clobetasol on my gums and it helped immediately.
I’m still working out the food restrictions. Yogurt is wonderful but don’t add crunchy granola… I could go
On and on .
I am worried about the side effects of to much clobetasol I guess it’s a strong steroid. Steroids have been a dear friend for all my weird chronic pain issues I stress over so much that probably caused me to get lichen planus. Seriously,
I definitely see
The correlation between stress and flares- oh my tongue always feels fat! I forgot that because it has become part of who I am now. Good luck not fun. I do take lots
Of supplements B’s k’s turmeric lots
More.

hem1959 | @hem1959 | Sep 19 12:31pm

In reply to @JustinMcClanahan "Hello @hem1959, I would like to invite @suecutuli, @pacific2 and @ginala to this discussion to share..." + (show)

Thanks for all the great responses folks! Sorry for my delay, I've had a couple crazy weeks and forgot to check back. My OLP has calmed down a bit with the dexamethasone mouthwash and using the kids' watermelon toothpaste. I still use the clobetasol ointment on extra-inflamed places. I'm just trying to manage it without giving up EVERYthing I love to eat and drink!