Lichen planus

Posted by firelady @firelady, Sep 2, 2012

I was diagnosed about two yrs ago with lichen planus an auto imune disease they say it is very rare and not contagious yet my younger brother has it also. I have the skin lichen planus as well as oral lichen planus which affects my gums, cheeks, and tongue. It is very , very painful. I had a very large back surgery in April and I got lichen planus sores on my back as a result of the trauma from surgery my incision that is twenty inches long healed but my sores from lichen planus are still open. I don't know how to get them to heal and right now I have just developed an outbreak in my mouth. The pain is so deep in the nerves that I feel like my teeth are going to explode and I can feel my pulse under my teeth. I can't explain the pain and I am begging for someone to tell me if they found anything that helps with the pain. Also I never heard of lichen planus , what can I expect from this disease? How often will I have outbreaks? will it ever go away? Should I have my teeth pulled out or will dentures make it even worse? Not too many doctors seem to know much if anything about this auto imune disease.

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rashida | @rashida | Jan 2, 2023

In reply to @lisa816 "Thank you so much. This has been by far the worst experience that I’ve had. It’s..." + (show)

@lisa816 I hear you! Doctors prescribed me Nystatin oral rinse,
Prednisolone, etc. and nothing worked - till one oral pathologist prescribed the Lyderm gel. I applied it on my gums and inner cheeks twice a day for ten days and everything cleared up. It should not be used longer, or long term, but if I get the occasional flare now, usually one application is enough.

I also avoid eating mushrooms because I find that triggers the oral lichen planus.

lisa816 | @lisa816 | Jan 2, 2023

I can’t thank you enough for your response and advise

raye | @raye | Jan 2, 2023

In reply to @mjt "Help. I developed this after Covid November 2020. I can not find anyone to treat this...." + (show)

I don’t have that condition and can only suggest try homeopathic Sulfer under the tongue because it stops my cold sores from forming scabs. They just reverse themselves. Wishing you well.

mom2204 | @mom2204 | Jan 2, 2023

Until you can get a diagnosis, I would think even temporary help to control the oral itching and pain…I have recipe I got from a chemotherapy nurse called Mary’s manic mouth wash. There may be a recipe for it on line. It addresses possible yeast infection of the mouth which can be brought on by stress of trauma and antibiotic treatment, depending how your trauma was treated. NYSTATIN, BENEDRY and steroid. I have the recipe and I’ll see if I can just write it down. A compounding pharmacy can mix it up. And you need a doctor or nurse practitioner prescription.

bustrbrwn22 | @bustrbrwn22 | Jan 3, 2023

In reply to @lisa816 "Thank you so much. This has been by far the worst experience that I’ve had. It’s..." + (show)

@rashida. Please let us know if this works.

lisa816 | @lisa816 | Jan 3, 2023

In reply to @mom2204 "Until you can get a diagnosis, I would think even temporary help to control the oral..." + (show)

I thank so much. If you could find that recipe I’ll have my surgeon call it in for me it’s been 3 wks since my major surgery and my mouth has had me living in pure misery. It’s getting so bad I’m getting anxiety attacks now.

rashida | @rashida | Jan 3, 2023

In reply to @bustrbrwn22 "@rashida. Please let us know if this works." + (show)

@bustrbrwn22 - do you mean Lyderm gel? Yes, it certainly worked for me. Oracort, Nystatin, Prednisolone and many other treatments were tried and did nothing for me. Ten days of Lyderm twice a day cleared my mouth. It is not recommended for long term use, but I have had a couple of flares since then and just one application has been enough to clear it again now.

bustrbrwn22 | @bustrbrwn22 | Jan 3, 2023

In reply to @rashida "@bustrbrwn22 - do you mean Lyderm gel? Yes, it certainly worked for me. Oracort, Nystatin, Prednisolone..." + (show)

@rashida thanks. I knew it was a steroid and wanted to make sure you didn’t have a more serious oral outbreak that requires a high dose prednisone taper.