Oral lichen Planus: What home remedies or medications help you?

My gums are painful and raw in places. Have been diagnosed with lichen planus. Anyone else dealing with this. Told to keep mouth clean, which I have always and get teeth cleaned every 6 months, water pik, dental floss etc. Also recommended Crest Pro Health mouth wash. Anyone else dealing with this? . I am probably overly paranoid too as my spouse is recovering from tongue cancer and lymph node removal surgery. Thank you.

@microgirl it is wise to keep stocked up on clobetasol but there are other ointments left that have less steroid strength that will result in less loss of skin elasticity if your dermatologist is open to them. If you rarely have an outbreak clobetasol is fine but I tend to get them everywhere so have tacrolimus and desonide for my lips. Please watch your scalp closely. If you notice unusual hair loss report it to your dermatologist. They probably won’t take you seriously but early, aggressive treatment is critical for females to keep as much of their hair as possible to avoid permanent hair loss. LP of the scalp is lichen planopilaris. In a pinch Emuaid first aid ointment has worked for me on skin lesions. May I ask where you have LP on your body so far?

I have vaginal lp. I wonder if I may have esophageal lp as I started clearing my throat so often (about the same time as the oral lp was diagnosed) and I also often feel as though I can’t get food down and that has been terrifying at times. Recently had a periodontist appt and the hygienist examined my mouth and said-oh, there’s a lesion here and one there-I apparently have lesions and thankfully there is no pain but my tissue is sloughing away!!!
I was told over the summer to use Clobetasol every day which resulted in thrush! 🥲
It’s difficult to complain when so many people are in painful misery, whereas I have erosive lp with no symptoms 🤷‍♀️

@microgirl. Don’t compare your medical issues with others. You have a valid, frustrating condition. It is a terrible one to have. I forgot about the thrush. Yes I have a separate swish and spit for thrush. It never ends…. But for me commiserating with fellow LP folks helps.

I have oral Lichens Planus. My oral surgeon gave me shots of steroids directly into my ulcers on my tongue and they went away for now. One win! However, my immune system has been so compromised, I got shingles after the steroids and am dealing with severe nerve pain now. Most painful thing ever! Almost unbearable.

Hi @steveandsteph, welcome. I moved your message to this existing discussion about oral lichen planus.

- Oral lichen Planus: What home remedies or medications help you?: https://connect.mayoclinic.org/discussion/oral-lichen-planus-3/

I did this so you can connect easily with fellow members like @maryz @cmtg @bustrbrwn22 @robinkani @fdixon63 @rashida @artist01 @jshdma @microgirl @chari9 @SusanEllen66, who have experience with OLP.

Steve/Steph, you ask specifically "Can I take Shingles vax with OLP?" That is a very good question and best answered by a physician. You PCP should be able to talk to you about the risks and benefits, and when to get vaccinated.

I believe @chari9 spoke about having OLP and shingles simultaneously and that's rough. I'll be interested to hear what you learn.

How low have you been dealing with oral lichen planus?

@steveandsteph
Hi Steve and Steph. I've had painful lesions since 2020 with 2 or 3 diagnoses, 5 or 6 prescription meds, 4 or 5 doctors, and no definite diagnosis. One of the most eminent doctors thinks it is NOT Oral Lichen Planus. I've recently been confirmed by testing and diagnosed as having IBD, with very high inflammation markers. I know that UC and Crohns can have this symptom and have suggested it several times to my doctors. I finally have a long-requested appointment with an oral surgeon for a biopsy on October 19th!
I'd be grateful if you could tell me if you have the result of your biopsy yet. Also, were you laid up afterward with pain and not too able to eat, talk, etc. for a while?
I had a traumatic experience years ago with a tongue biopsy that ended up with hospitalization that night from excessive bleeding and blood transfusions. Very painful for a few weeks afterward. Needless to say, I'm a bit nervous for this new biopsy procedure. Lol.
Warm regards, Laurie

Laurie,
You have had too much time without proper diagnosis…. How horrible:( I feel really bad for you. I had biopsy and it takes 2 weeks to get patho and histology so I get results this Thursday and will let you know. Mine was sent to Florida University Oral Path lab… supposedly excellent but I’m very untrusting with this mouth mess so I’m having one done at UMKC at the recommendation of doc friend who was misdiagnosed with leukoplakia. Sometimes I think they just don’t know or can be wrong:(

On another note… I had zero pain after my biopsy that was done on my gums. He pulled six pieces and I was fine so think you will be good:)))
Best wishes, Thais really is tiring and scary for you… I know too well.
I’m a nurse so I recommend one thing … get your Shingles vax as when you talked steroids, they hurt your immune system and ya sure don’t want to add insult of shingles.

@artist01 someone on one of these lichen planus threads said she uses Crest Kids toothpaste. I did try it and it certainly eased the soreness, although the Fluocinonide gel was what finally cleared it after my last flare up early this year.

@rashida
Hi Rashida! Thankyou very much for your helpful response with regard to OLP
and the toothpaste discussion. I apologize for my slow reply.
I've made note of Kids' Crest toothpaste, Niazepam and Fluocinonide Gel and will see what my newer docs suggest. I might try the Kids' Crest on my own, if I feel brave! So scared to try anything new in case I make things worse. Take care. Laur