Oral lichen Planus

Posted by lovebug61 @lovebug61, Apr 4, 2019

Anyone in the group suffer from Oral Lichen Planus. I am at my wits end with all these erosive sores in my mouth. I've had two biopsies , one in the inside cheek and one under the side of my tongue. The spot under the tongue is extremely sore to touch and has been for over a year. It scares me because the soreness never goes away, sometimes it isn't as sore but nothing helps. Any home remedies for this dreadful condition?

I assume the doctor tried the usual treatment for OLP, which is steroids. They usually work, but have to be repeated. Otherwise, I can tell you that after many years of BMS, there are no effective treatments. Good luck. J

REPLY

Dear Lovebug61. I know the pain and frustration that come with OLP after many years. Because we are only 1% of the population it is a rare medical person who has interest in this disease. After 30+ year the severity ebbs and flows. Be sure that you see someone regularly/quarterly who can track your LP. After a particularly bad 6 months I have trays made for my teeth and use clobetazol 5% gel 3times a day until the inflammation and lesions are reduced. This was after Prednisone injections in my cheeks. I take 8000mg total of Tumeric with bioprine divided 3times a day with food. I have been told to eliminate ALL dairy as some patients seem to be allergic to the milk proteins…so I have been very diligent about reading labels. I am not yet sure if the diet change will help the LP but the Exema that I had developed about 3 years ago has disappeared and did so after about 5 days. My greatest success has been when we lived near Medical Schools and I was seen by Dr’s in the Oral Med or Stomotology clinics. They reviewed me quarterly, watched and tested for oral cancer. And tried various protocols etc to help. The pain at night was helped by using Xylimelts w/o mint, by OraCoat, During the day using small amount of Viscous Lidocaine. I also exercise daily to get my heart rate up as I believe that also increases the blood flow in my mouth which helps my healing. I hope some of this helps with your symptoms.

REPLY

I have oral lichen plays

REPLY

I have sores in mouth pain in cheeks and tongue has fires and burning. Help!!

REPLY

I was diagnosed with lichen planus many years ago. I was given Fluocinonide gel USP, 0.05%. I works overnight like a charm. I will not go anywhere for too long without taking it with me. It was found that I bite the inside of my check at times especially if I chew gum. I no longer chew gum. As we age, our muscles begin to sag (yes even in our face), and as a result we have to pay attention to our back teeth wearing and getting sharper around the edges. The dentist can round the sharp edges off. I know just how painful it is when we get the open sores in our mouth. As an FYI, should you get the script for the Fluocinonide, you will read that it is for external use only. Since everything we put on externally goes into our pores and into our body, I was not worried about reading "For external Use only". I am sure the Oral Surgeon would not have prescribed it if he felt there was danger in using it in my mouth. Good luck.

REPLY

I have had Lichen Planus for over 2 years on my gums with extreme bleeding. A few months ago I developed a sore on the side of my tongue. Hurt to eat talk..ect. My sister who is an RN suggested I take Valtrex. After taking 2 tablets a day for 4 days all Lichen Planus vanished. This leads me to believe it is viral. 2 months later and very little symptoms of LP.

REPLY

@lichenplanussufferer Hi. Did you have lichen anywhere else on your body besides your mouth?

REPLY

I have lichen Planus Orally, in the genitalia , and on my skin. Some form of anti inflammatory is regularly prescribed! There is no cure but you cam maintain a reasonably pain free life if you don’t let the lesions overwhelm you. I see 3 different Dr’s as they each treat a different body part. But I am reasonably pain free and am able to eat. Best of luck. My Gynecologist refereed to LP as the Trifecta. I have had the disease for about 37years. The treatment is much better now! Foods that aggravate my symptoms are: Any small amount of dairy, any nuts, acid foods and alcohol. Best of luck!

REPLY
@maryz

I have lichen Planus Orally, in the genitalia , and on my skin. Some form of anti inflammatory is regularly prescribed! There is no cure but you cam maintain a reasonably pain free life if you don’t let the lesions overwhelm you. I see 3 different Dr’s as they each treat a different body part. But I am reasonably pain free and am able to eat. Best of luck. My Gynecologist refereed to LP as the Trifecta. I have had the disease for about 37years. The treatment is much better now! Foods that aggravate my symptoms are: Any small amount of dairy, any nuts, acid foods and alcohol. Best of luck!

Jump to this post

@maryz 37 years? Do you go through remission years or is it always popping up somewhere? None of the nurses I knew and even the first dermatologist I went to had even heard of lichen. I had my first breakout about 1.5 years ago and the only places it wasn’t was where people could see like my face and hands. I had sores on my scalp thank god covered by hair but my hair did thin for a little while. I was seeing a dermatologist who kept saying it was the soap I was using and to come back in 6 months and another 6 months. It was a hot July day when my neighbor a nurse saw the blisters between my toes and the sores all over my calves and was clearly grossed out. She said “you need to go to a different dermatologist asap this is not a soap allergy. There’s more doctors involved but I’m boring myself. Did they even know what LP was 30 years ago????

REPLY
@robinkani

I have been diagnosed with lichen planus and as a professional flutist, it is ruining my life!! I am now thinking of a nutritionist and doing an elimination diet. Any thoughts? My oral surgeon is suggesting going to University of Pa. to find out more info. Right now, I cannot perform professionally. thick lower lip, dry, scaly and numb. The inside has been getting better as I have been on steroids for almost one month.
Any thoughts would be appreciated.
Thanks!

Jump to this post

@robinkani Welcome to Mayo Connect.
There is an existing discussion here on oral lichen planus https://connect.mayoclinic.org/discussion/oral-lichen-planus-3/
I would ask @colleenyoung, our moderator, to move your post there.
@bustrbrwn22 has replied on that thread, and @maryz with @lichenplanussufferer
Ginger

REPLY

I have been diagnosed with lichen planus and as a professional flutist, it is ruining my life!! I am now thinking of a nutritionist and doing an elimination diet. Any thoughts? My oral surgeon is suggesting going to University of Pa. to find out more info. Right now, I cannot perform professionally. thick lower lip, dry, scaly and numb. The inside has been getting better as I have been on steroids for almost one month.
Any thoughts would be appreciated.
Thanks!

REPLY
@robinkani

I have been diagnosed with lichen planus and as a professional flutist, it is ruining my life!! I am now thinking of a nutritionist and doing an elimination diet. Any thoughts? My oral surgeon is suggesting going to University of Pa. to find out more info. Right now, I cannot perform professionally. thick lower lip, dry, scaly and numb. The inside has been getting better as I have been on steroids for almost one month.
Any thoughts would be appreciated.
Thanks!

Jump to this post

@robinkani welcome to Connect. You'll notice that I moved your message to this active discussion about oral lichen planus. I did this so that you can connect with other members like @maryz @cmtg @frane1939 and @bustrbrwn22.

As a professional flutist I can't imagine getting this. I'm a horn player and suffer from canker sores, but they go away. I agree with your doctor about going to a learning medical center. I hope they will have suggestions for you. How have the steroids be affecting you? Are they also helping the lower lip (so crucial for the flute)?

REPLY

The lips are the most important. So far the steroids have done nothing to help. Still stiff and inflexible.

REPLY
@robinkani

The lips are the most important. So far the steroids have done nothing to help. Still stiff and inflexible.

Jump to this post

@robinkani the dermatologist I see was utterly surprised about my lip complaints. They always feel bloated and wrinkled, like I was under water for hours. They look normal though. Basically she told me to use petroleum jelly or Aquafor. Nothing else to be done
Since this is the least of my issues I’m using petroleum jelly.

REPLY
Please login or register to post a reply.