Oral Lichen Planus

@louise05 to learn how to use Mayo Clinic Connect is just to start using it to get comfortable with it! I was a total neophyte when I started using the site. If you look at the right hand side of this page, there is a boxed area that asks “New to Mayo Clinic Connect?” Click on it and it should take you to lots of ‘where is’ and ‘how to’ sites’.
Check out some of the other discussions on oral lichen planus. Many are very helpful!

OMG what am I going to go through? New diagnosis post confirmed biopsy of lichen planus in my mouth. Im all over the place with how did I get this? and what does my future look like? Any advice

From Mayo Clinic:

"Lichen planus may be activated by:
Hepatitis C infection.
Pain relievers and other medicines.
An allergic reaction to the metal in dental fillings."
https://www.mayoclinic.org/diseases-conditions/lichen-planus/symptoms-causes/syc-20351378

Hello @lizralpol,

I moved you discussion and combined it with an existing discussion titled:

"Oral Lichen Planus"
- https://connect.mayoclinic.org/discussion/oral-lichen-planus-1/

@diana70 started this discussion and mentioned they have been living with the diagnosis for 12 years. You can also meet @rashida and @marymaryoregon in this conversation as well as they have both shared what they have tried to use to manage this diagnosis.

@lizralpol - when you received your diagnosis did you receive any instruction or guidance on next steps?

@lizralpol it is an autoimmune condition which, like all other autoimmune conditions, cannot be cured but can be kept under (reasonable) control.

It took several years, and visits to several doctors - dentists, periodontists, maxillofacial surgeon, oral surgeon, dermatologist, back and forth to more of these until finally I was referred to an oral pathologist. He tried some treatments that didn’t work (Prednisone Oral rinse, Oracort, something else I can’t remember that was bubblegum pink and tasted vile to me, etc.). He finally prescribed Lyderm Gel 0.05% and bingo! It worked - albeit it took about ten days because my mouth was in such bad condition by then.

Lyderm Gel is a topical but can be used off label as in my case and it should not be used long term. Seven days is the recommended time period but I went beyond because my mouth took that long to heal. Now I just apply the gel on the sore areas in my mouth with a Qtip whenever I have a flare which usually is not as bad as I started out with.

If you get your doctor to prescribe Lyderm, make sure it is the gel form and not the cream.

I find also, that my gums and inner cheeks flare up any time I eat mushrooms used in any way, shape or form so I have to avoid them like the plague - and I love mushrooms!

Hi
I live in regional area in Australia and we dont have dentists who stay in area long. Usually newly trained straight out of uni. I was told consistently that I was over brushing, until a reasonable dentist referred me to Melbourne Oral Medical Centre who took one look and said yep thats it, but did a biopsy to confirm. I am grateful I have been caught well. She has me on a special toothpaste Curasept with 0.12% chlorhexidine and the gel to use only on biopsy site currently. The lichen is changing but not gone but early days I suppose. This all came about because I had a white spot on my tongue that came back as squamous papilloma which was removed and declared benign. I was so worried I had cancer

I have never had Hep C, although I have worked with a lot of Hep C patients as I am a Registered Nurse. I have not had near misses with these over the years. i have had metal dental fillings for years and probably still have a couple. They replace them as needed with better fillings.

only discussion and guidance i was given was - "come back straight away if concerned", "lifelong regular checks with dentist/GP/oral centre anyone who can monitor as I must now be monitored regularly", and "back in 3 months for 3 month visits, if stable will go to 6 month visits then 12 months". But the cost, OMG so expensive especially when we are looking at retiring.

I was diagnosed several years ago by my dentist. It was about 5 more years before it became bad enough to start medicating. It can't be cured. So my biggest advice is self care...... avoiding spicy foods that create a flare. Good Luck!!

I am struggling with eating anything a little sharp or crunchy. Nuts definitely out, lettuce, coleslaw scrapes gums with each chew. I just hope it will ease up.