Lichen Planus Support Group

as i'm typing this, through tears, my mouth hurts so bad that it's almost unbearable. my gums are rimmed with ulcerations, from one end to the other and from top to bottom. i have ulcers under my tongue and my tongue is so swollen that i can barely talk. it also feels as if someone is holding a torch about one inch from the top of my tongue and blasting it full force. this go of it also has my teeth hurting like crazy. know how about a toothache hurts? ALL of my teeth feel like that right now.

another joyous day in the life of someone with erosive oral lichen planus...

i try and tell myself that i should be thankful for "life" and that i could be worse off than i am...but then i ask "really"? could anything be worse than this pain? i guess death could...and then i wonder if my death is the only thing that will relieve my pain.

now dont worry...i'm not suicidal...just trying to express my feelings in hopes that others who are suffering will not think that they are alone. gosh...we kind of are alone...not too many of us out there, huh?

i'm finding myself sinking into a depression and my level of compassion for others is fading. that's not me at all ! ! when i hear someone complaining about having a headache and they have to go to bed, i want to scream "i wish i only had a headache !!!"

i pray to God and ask him "why me?" he answers most of my prayers...but i've yet to figure this one out. ARE YOU LISTENING TO ME???????

Hi Madisonavery

I am so sorry you are in so much pain. I also have OLP but it is not as severe as yours is right now. I can relate of all of your feelings but you are not alone. How long have you had it and what are you doing for it so far?

hi...

i have had olp for approximately 6-7 years. i've probably seen just as many drs., if not more. two biopsies came out inconclusive. no one knew what it was but i was able to obtain prednisone from all of them, which would clear my mouth within days. my olp NEVER completely goes away unless i take a full round of prednisone (4-6 weeks)which i've only done two or three times. since prednisone is not good for you, i would normally just keep it on hand and when things started to get bad, i would only take it for a few days to get it under control.

it wasnt until my legs started breaking out that i finally got a diagnosis. the biopsy on my legs came back LP...so my current dr at emory university said there wasnt any need to biopsy my mouth again...it was obvious what it was.

he wanted to put me on azathioprine...but i refused, without trying some of the other less potent and not so potentially life threatening drugs. currently i have been on metronidazole for around a month. it is working great on my legs but doing NOTHING for my mouth.

update:

finally was able to get through to my dr. because of the severity of my olp, the prednisone was started back to get it under control. after my taper, i will start with another "trial and error" med. i must say that even though my mouth is in horrible condition...just knowing that i can pick up my DEAREST friend, mr prednisone, has lifted my spirit.

what have you tried?

hope all is well

Hi Madison,

So sorry you are going through this--you are not alone--I share in your feelings--I have had OLP and vaginal LP for a little over a year now--my OLP can hurt sometimes more --sometimes less--I have not treated it with anything--I have had a really hard time dealing with it vaginally-currently I am in a good place with the use of steriod creams and am finally able to resume my sex life --my husband has been rather patient this past year.Steriods seem to be the only thing that helps this wicked disease--I just thought I would comment that you are not alone Shelly

hi shelly...thanks for the feedback.

started back on the prednisone two days ago and i'm already feeling some relief. my dr has me on a 4 week course and after it is completed i'm starting yet another new med to see what success i will have with it. all i can do at this point is keep my fingers crossed ! ! !

Hi Madison

I haven't tried any perscription drugs for my OLP. I was given a perscription mouth wash for oral fungus at first just in case that was the problem, but that just made it worse and my doctor had me stop using it when biopsy came back positive for OLP. Under the medical heading in this forum I read what the results people were having with different meds and decided I would try the natural way first. I did use my husbands perscription athletes foot cream on the outbreak I had on my legs. That cleared it right up...I hope. I have been using biotene toothpaste and biotene oral gel. I use the oral gel at night and chew gum too so that I don't wake up in the night with my mouth so dry it hurts. I chew gum all of the time to keep the saliva working, that keeps my mouth from drying out and getting sore. I gave up caffeine, chocolate, and anything spicy....like most of my favorite foods But I would rather do that than start having open sores in my mouth. My tongue is affected too so when I talk to much it will swell up and make it hard to talk. It is not as bad as it was since I have started taking these new measures. Good luck

Have either of you tried a gluten free diet? Shelly

No I haven't tried the gluten free diet. What have you heard about it?

I tried gluten free for a week and nothing at all changed. I think the natural way is the way to go it seems the steroids just make it keep coming back. I'm currently doing light therapy for my body but haven't treated the oral or vulvar yet because I am so afraid of the effects of such strong meds. There must be a way to restore the immune system, which is really what is causing this awful disease...