1. < Autoimmune Diseases

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

Thank you so much. This has been by far the worst experience that I’ve had. It’s been three days of excruciating pain. I am going to see my dentist and my primary and hopefully my dermatologist . Thanks again I will ask one of them to prescribe this med

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@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.

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lisa816 | @lisa816 | Jan 2, 2023

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

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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)
@mjt

Help. I developed this after Covid November 2020. I can not find anyone to treat this. My pcp told me it looked like oral lichen planus. I had to beg for lidocaine to make my own magic mouthwash. Currently I ran out but have Hurricane. It’s not cheap. I can’t find anyone to look at this. I got an appointment with an ENT 2 hours away…it took 3 months. He told me nothing was the matter. My response was it took 3 months to see him and I had treated it with self mixed magic mouthwash. All vinagered foods, toothpaste etc are killers. Currently I have 5 cold sores under my tongue, my salivary glad is inflamed as well as my gland on.the same side. ENT refused to biopsy. I have RA dx 10 years ago. Dermatologists appointments are 6 month wait, no dentist take new patients…do I go to an oncologist? Unfortunately all my doctors retired. This flare happened after I bit my cheek..again. Scar tissue there that makes it impossible not to rebite. My fabulous dentist retired , then passed away,..otherwise he would have helped me. It’s 3:30 am..I’m in so much pain I can’t sleep. Thank you and help. I currently am on a biologic infusion every month for my RA. My wbc is low..D3 low. All other vitamin levels ok, I am alo taking lysine, magnesium and zinc

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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.

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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.

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1 reply
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)
@lisa816

Thank you so much. This has been by far the worst experience that I’ve had. It’s been three days of excruciating pain. I am going to see my dentist and my primary and hopefully my dermatologist . Thanks again I will ask one of them to prescribe this med

Jump to this post

@rashida. Please let us know if this works.

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1 reply
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)
@mom2204

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.

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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.

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rashida | @rashida | Jan 3, 2023
In reply to @bustrbrwn22 "@rashida. Please let us know if this works." + (show)
@bustrbrwn22

@rashida. Please let us know if this works.

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@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.

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1 reply
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

@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.

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@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.

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mom2204 | @mom2204 | Jan 5, 2023

No salaries is a sure invitation to yeast. Nystatin in the recipe is necessary

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1 reply
mom2204 | @mom2204 | Jan 5, 2023
In reply to @mom2204 "No salaries is a sure invitation to yeast. Nystatin in the recipe is necessary" + (show)
@mom2204

No salaries is a sure invitation to yeast. Nystatin in the recipe is necessary

Jump to this post

My spell check would not let say SALAVIA

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