Erosive oral lichen planus

Posted by germany2 @germany2, Mar 20, 2017

Hello
I’m new to the group. I was diagnosed with erosive lichen planus 4 years ago and it has been a nightmare since. Mine has progressed from my mouth to my esophagus, nose and eyes. I’ve seen so many doctors @ Vanderbilt and St Thomas Hospital who have no idea how to treat my illness. I’ve. Even advised to go to the Mayo Clinic in Rochester but I’m really not sure what doctor or doctors have experience with treating this disease. Any help would be appreciated
Thanks

Liked by fancyrph

@kymillie

I too have had oral lichen planus under one side of my tongue for many years. Last year I was diagnosed with chronic kidney disease and the nephrologist rx’d Calcitriol to supplement OTC vitamin D that I was taking for osteoporosis, even though my calcium level was normal. A few weeks later, I noticed that my lesions were much improved. Mentioned this to my dentist (who first discoversed it) and he asked if anything had changed in meds and the only thing was the Calcitriol. I definitely credit this med with relieving me of all symptoms. It was a beneficial side effect for sure.

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@kymillie If supplementing with calcium were the solution to OLP, that would be a miracle. I've had numerous suggestions, none of which worked.

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@jp53

What resources would Mayo Clinic-MN have for evaluating L.P.? I have had to educate my local health care providers on the condition. At this point I would like to deal with a specialist instead of working my way up through the health care hierarchy. I have oral and vaginal involvement and now I suspect esophageal issues. I’ve dealt with this for about 4 years and I’m still waiting for the spontaneous remission!

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What side effect to you have with esophageal LP. I have oral LP and Vaginal sclerosis. I have had issues with ears, nose and hair.
I have recently had problems swallowing.
When I am stressed and have an outbreak it is awful. 12 years of searching for right doctors. I think I have found right doctors and treatments.

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@march13

What side effect to you have with esophageal LP. I have oral LP and Vaginal sclerosis. I have had issues with ears, nose and hair.
I have recently had problems swallowing.
When I am stressed and have an outbreak it is awful. 12 years of searching for right doctors. I think I have found right doctors and treatments.

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@march13 Please tell us about the right treatments (and doctors, if you can). Glad someone has gotten rid of this evil condition (I mean "Satanic").

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@jshdma

@march13 Please tell us about the right treatments (and doctors, if you can). Glad someone has gotten rid of this evil condition (I mean "Satanic").

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LP is treatable but never cured. I use Clobetasol gel for for lichen planus sclerosis on vagina, clobetasol liquid for head. For my mouth I use Dexamethasone mixed with Nystaton. This a liquid steroid and with outbreak, rinse four times a day. Breakout at different times but using these drugs have kept LP under control and of course commitment to meds and lots of patience. I go to the only dentist in the largest city in US and past year have gone to Gynocoligist for vagina. Was going to dermatologist but was not very successful. Now I find out about escophageal LP which I did know about and am shocked. Scheduled for test on throat and hope it just needs to be stretched. Problem swollling.
Have had LP on and off 12. Hope I have been of help.

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I am desperate… Does anyone know of a doctor able to treat Oral Lichen Planus in Las Vegas, or even California which is 6 hours away from me.

Liked by fancyrph

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@grammlyn

I am desperate… Does anyone know of a doctor able to treat Oral Lichen Planus in Las Vegas, or even California which is 6 hours away from me.

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Hello. I just finished taking prednisone 40 mg daily for 4 days (for a different issue) & my mouth has cleared up for the most part for now. Have you tried that? Do you have a primary care doctor who you can discuss this with or have already discussed the issue with? Or perhaps an oral surgeon? Maybe you could take some information in hand with you on steroids & treating OLP if you see a doctor. I have suffered for going on 5 years now with erosive LP. In the beginning I lost 30 lbs because I couldn’t eat much. Someone mentioned a few weeks ago on the post about calcium helping them so I’m currently trying that only because I remember last year starting on calcium & improving- but I attributed it to a soup/juice cleanse, chiropractor, etc. Looking back now, I see it could have possibly been the calcium. I have started back on calcium & am hoping this is part of an answer. But a large dose of steroids has helped me tremendously. It took this big dose for 4 days because I was on prednisone 2.5 mg daily for a year & it didn’t do anything. Neither did topical steroids applied topically in mouth. Hope this helps.

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@grammlyn

I am desperate… Does anyone know of a doctor able to treat Oral Lichen Planus in Las Vegas, or even California which is 6 hours away from me.

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I have also used an Rx compound of lidocaine & dexamethasone that helped. It was ordered by my dentist & filled at a compounding pharmacy. My primary care doctor has also ordered plain viscous lidocaine for me to use topically. I put the liquid in an oral syringe (like for kids) so I can then just put a drop or 2 on the erosive lesions.

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@grammlyn

I am desperate… Does anyone know of a doctor able to treat Oral Lichen Planus in Las Vegas, or even California which is 6 hours away from me.

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@ grammlyn OLP is treated with steroids, not always huge amounts. The right doc might be ENT or even dermatology. Try calling a medical school and get reference.

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@jshdma

@ grammlyn OLP is treated with steroids, not always huge amounts. The right doc might be ENT or even dermatology. Try calling a medical school and get reference.

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I’m just mentioning what worked for me recently was a pulse dose of steroids. Obviously one wouldn’t want to take a pulse dose of steroids chronically because it’s a pulse dose. For me recently, a small dose of steroids didn’t work either. I’m not sure a dermatologist would be skilled or proficient in treating OLP. Especially if a biopsy on an oral cavity was needing to be done. I would only recommend an oral surgeon for that if need be. An ENT might be useful, especially if mucous membranes are involved in the nose.

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@fancyrph I went to an ENT, he recognized OLP (under tongue), treated with a couple of (light dose) steroid shots, and it went away.
Can you explain what a "pulse dose" is?

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I have seen specialists all over the country and New Zealand. One of the best doctors I've encountered was Joanna Badger at Stanford Medical Center. Here is a link to her information -https://stanfordhealthcare.org/doctors/b/joanna-badger.html?ecid=glocalsearch-ls-google-doctor-all-JoannaBadger

Good luck. As mentioned in this discussion group frequently, clobetasol applied topically helps and dexamethasone mouth rinse helps. Steriods cause many other problems and I will not take them any longer. I'm 69, was diagnosed when I was 30.

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If you're on the East Coast I highly recommend Dr.'s Mieller and Garber at the University of Maryland Dental School in Baltimore. They helped me a great deal and I have my oral lesions under control by using clobetasol creme. We had trays made, not unlike retainers, that extend onto my gums. I apply the creme, cover my teeth and gums with the trays and do this for 15 min twice a day. It works!

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@ibclng

Can anyone gave me insight on Lichen Planus. I was told I have this but not how a help with the symptoms.

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Hello @ibclng, welcome to Connect. There is another discussion on Connect where your post may receive more visibility and you can meet other members discussing oral lichen planus. I'm tagging our moderator @ethanmcconkey to see if we should move your post to the following discussion. In the mean time you may want to read through the discussion and post any questions you may have.

> Groups > Autoimmune Diseases > Erosive oral lichen planus
https://connect.mayoclinic.org/discussion/erosive-oral-lichen-planus/

Are you able to share anything you have already tried for treating your symptoms?

You may also want to listen to the following Medical Edge Radio episode, where Mayo Clinic Dr. Phillip Sheridan discusses a condition known as oral lichen planus — https://newsnetwork.mayoclinic.org/discussion/treating-oral-lichen-planus/

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Can anyone gave me insight on Lichen Planus. I was told I have this but not how a help with the symptoms.

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Hi @ibcing I want to join @johnbishop in welcoming you to Connect. Per his suggestion, I moved your post to this existing discussion on lichen planus so that you can connect with others with this condition.

I wanted to introduce you to fellow Connect members @jshdma and @fancyrph as they may be able to offer you support.

Back to you @ibcing, what symptoms are you experiencing right now?

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