Desperately seeking a Specialist for my Oral Lichen Planus

Posted by melanie3k @melanie3k, Jul 17, 2022

I've been treated for my Oral Lichen Planus with steroids, Hydroxychloroquine, Methotrexate and now Leflunomide. I have limited success and then I have a reoccurrence. I have no idea what retriggers the outbreaks but I'm not sure what to do. I've gone to the dentist. Who sent me to a dental specialist, who sent me to a rheumatologist, who told me to go back to the dental specialist. I'm frustrated and I have no idea what to do next. Are there any studies in the Baltimore area? I would be more than happy to take time off from work to be guinea pig. I'm desparate!

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I've had a very long history of OLP as well as LP on other parts of my body. Before I could get a Dx my gums became erosive. I've learned a lot from trial and error and from reading articles, etc.
You may find answers at this source. I've sent Dr. Burkhart emails a couple of times and she has always very graciously responded. OLP is their main area of interest. Best to you as you move forward.

Dr. Nancy W. Burkhart, Ed.D, M.Ed., BS, RDH, AAFAAOM
Department of Periodontics, Adjunct Professor
College of Dentistry, Texas A&M University
3302 Gaston Ave.
Dallas Texas 75246
nancy.burkhart@tamu.edu
The International Oral Lichen Planus Support Group https://dentistry.tamhsc.edu/olp/

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I used Miracle Mouthwash (RX with nystatin) years ago and it seemed to resolve. My doctor ordered it from a compounding pharmacy; I think that is better than OTC. Also called geographic tongue, it appeared when I was stressed beyond what my weekly Methotrexate and Folic Acid handled. These days, my dental care includes the Oral B dry mouth wash with xylital (anti-bacterial).

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@marye2

I used Miracle Mouthwash (RX with nystatin) years ago and it seemed to resolve. My doctor ordered it from a compounding pharmacy; I think that is better than OTC. Also called geographic tongue, it appeared when I was stressed beyond what my weekly Methotrexate and Folic Acid handled. These days, my dental care includes the Oral B dry mouth wash with xylital (anti-bacterial).

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marye2 - Lyderm gel really worked well with me. Before that I hat tried Nystatin, then Prednisolone rinse but they did nothing for me. Ten days using Lyderm and my mouth has cleared up. It’s been about two months since I stopped using the Lyderm gel after my mouth cleared up, and it is still clear.

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melanie3k - Lyderm gel really worked well with me. Before that I had tried Nystatin, then Prednisolone rinse but they did nothing for me. Ten days using Lyderm and my mouth has cleared up. It’s been about two months since I stopped using the Lyderm gel after my mouth cleared up, and it is still clear

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@melanie3k, I hope you've seen the helpful posts by @fdixon63 @rashida and @marye2.
I see that you are looking for a specialist recommendation in the Baltimore area. Have you considered consulting with someone at Johns Hopkins?

You might also be interested in this related discussion:
- Oral lichen Planus: What home remedies or medications help you?: https://connect.mayoclinic.org/discussion/oral-lichen-planus-3/

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@colleenyoung

@melanie3k, I hope you've seen the helpful posts by @fdixon63 @rashida and @marye2.
I see that you are looking for a specialist recommendation in the Baltimore area. Have you considered consulting with someone at Johns Hopkins?

You might also be interested in this related discussion:
- Oral lichen Planus: What home remedies or medications help you?: https://connect.mayoclinic.org/discussion/oral-lichen-planus-3/

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Hi Colleen,

Thank you. I was able to find a specialist who specializes in Oral Lichen Planus at Johns Hopkins. I have an appointment later this month. I wish it was tomorrow.

Thanks again for reaching out to me.

If you hear of a study I'm your gal!

Respectfully,
Melanie

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@melanie3k

Hi Colleen,

Thank you. I was able to find a specialist who specializes in Oral Lichen Planus at Johns Hopkins. I have an appointment later this month. I wish it was tomorrow.

Thanks again for reaching out to me.

If you hear of a study I'm your gal!

Respectfully,
Melanie

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I had a phone consult with an oral LP specialist dentist that I heard speak on an oral LP conference call sponsored by Texas A&M University. I had already been diagnosed with oral LP (along with LP on most of my body.). My husband send photos to this Dr and he gave me some tips on what to do. Unfortunately oral LP is a tough nut to crack and what works for one person may not work for others and for most of us it is a chronic, lifelong disease. I find a diet with no sugar, salt, chocolate, any crunchy or sharp foods has helped but I always have some sores at all times. Best of luck to you.

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I hear you sister. I can live without salt, crunchy and sharp foods, but sugar is a tough one. It kills me when I crave a juicy peach but it's going to cause me agonizing pain. I just want to get back to normal is again. Best of luck to you!

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@marye2

I used Miracle Mouthwash (RX with nystatin) years ago and it seemed to resolve. My doctor ordered it from a compounding pharmacy; I think that is better than OTC. Also called geographic tongue, it appeared when I was stressed beyond what my weekly Methotrexate and Folic Acid handled. These days, my dental care includes the Oral B dry mouth wash with xylital (anti-bacterial).

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My Dr prescribed me Dexamethasone for that. It has helped me immensely.

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I suck on a lot of mints and found out that they may trigger OLP. Will try to not use the, anymore. Anyone have the same result?

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