Yikes, a new immune mediated misery: Oral Lichen Planus

[Carolina]

Dearest Sjogren's Angelsl,

I have a new immune mediated disorder: Oral Lichen Planus.

One that is correlated with Sjogren's Syndrome, too.

https://www.gofsindy.com/files/2016/08/Oral-Lichen-Planus-Fact-Sheet.pdf

And the only treatment is some form of steroids.  I've been on high dose steroids over a year and a half.  I started at 16 mg Medrol and every time I try to reduce my dose of Medrol (Methylprednisolone) below 4 mg.....the problem comes back (Polymyalgia Rheumatica). 

I'm really tired of getting new 'conditions'.   Does this never end?

Any ideas?

Hugs, Elaine

[Scottietottie]

Hi 

I got that too! So saying ... it seemed to clear up and hasn't given me too much bother. Had a biopsy at a dental hospital so am pretty confident about the dx. Hope yours clears up.

Take care - Scottie 

[Carolina]

Hi Scottie,

My mouth is very sensitive to acidic, bitter, tart foods now.  My mouth doesn't hurt, exactly, tho' I can 'feel' that it's not quite right.

I have small fiber neuropathy which also affects my tongue and lips, so there's a lot going on.

This comes under the category: It's always something....and then it's something else.

Elaine

[trc1962]

So sorry you have this new malady and you are right, its always something. The young guy I work with (30 year old) developed lichen planus of his mouth. Like you, it was painful for awhile, but then it subsided and didn't return for a few months and only if he is tired or under great stress. He has a rinse that helps when it is active that covers his mouth. Maybe your lichen planus will quiet down soon. I sure hope so.