Oral Lichen Planus, how are you coping?

Hi the biopsy was at an oral surgeon's office On the bottom lower outer cheek next to gum 2 stiches that were dissolvable. It took about 7 days for them to get out of my mouth. The doctor was very good and they numbed the area and it was quick. It was more painful the 2nd day, mostly just sore. It did not cause an OLP eruption of any kind which was great and surprising. Let me know if you have any other questions. Have a good day!

Hi all, just checking in to give an update on this hateful disease. I found a great dermatologist who put me on liquid dexamethasone (swish and spit) and tacrolimus ointment 2 x a day. My mouth has really cleared up except for a few stuborn spots. It has been exactly 3 weeks. I am really happy with the results and scared to death about when I stop using these meds. The dermatologist said the idea is to put it to sleep and not wake it up. My GP suggested looking into a very low dose of naltrexone, it would be an off lable use based on its antiinflammatoey properties. Anyway has anyone heard of this or tried it?

@zinnia55
Hmmm, I have never heard of that. I use Clobetasol and a tacrilimus swish 3x /week. That seems to keep the symptoms down, however, I am under quite a bit of stress as I was helping to care for my mother and she passed a couple months ago. The will is going to have drama and I am already losing sleep so I am certain symptoms will start to flare!
I only see the specialist once per year and I never feel as though I know what I am doing as far as this goes. 🤷‍♀️

@microgirl I am sorry about the loss of your mother, I hope you can find some peace soon. How long have you ceen using the clobetasol and tacrolimus? Do you ever have a clear mouth? I was using dexametasone swish and tacrolimus ointment and it was doing great for about 3 weeks old spots cleared up but now I see new spots in different places 🙁 Its so frustrating.

This is so hard. My stress is way lower so I was hoping for remission. I swab my mouth at night with clobetasol. It works the best. I also saw someone posted using a red light. I have been using that for 2 weeks. I have some improvement, but not sure what to attribute it to!
If the person that posted the red light remedy could jump in and give me more specifics about their treatment i would appreciate it. I can’t eat any spice! I am pulling myself up and accepting this but it really sucks. My ENT just basically said the same thing! “ do whatever works, I’m sorry, this is a tough one with no answer “ I appreciate the empathy but a remedy would have been more helpful!

@suecutuli Hey I appreciate your honesty with the situation. I am freaked out most of the time because of this disease. I am trying to figure out the triggers and keeping a journal but like you said stress is a problem. I have my next appointment on the 2nd I will ask about red light and clobetasol. If I have anything new I will share it here. Thank you for your responses!

@zinnia55
Thank you so much! And best of
Luck. I’ve been using the red light for 3 weeks-
Not sure how long the other person used it before they went into remission. That would be so welcome

@suecutuli Hey if you have the chance can you provide me with make and model of red light? I saw a mouth one on amazon I might get, I would love to compare or just check it out. Thanks in advance. 🙂

@penn1023 So sorry I did not see this! Biopsy was on bottomleft inner cheek and I had 2 stiches that fell out after a week. It did not hurt to have it done, but the next day was very sore then fine. I hope this was helpful. Take care.