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Oral Lichen Planus: How do you cope with it?

Autoimmune Diseases | Last Active: 1 day ago | Replies (59)

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@lizralpol

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

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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!

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!!