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Mucus Membrane Pemphigoid

Posted by ali119 @ali119, May 6 9:29pm

I just got diagnosed with Mucus Membrane Pemphigoid and I'm really scared. I only have it in my mouth. Would like to know if anyone has this and what has worked for them. I am setting up an appointment with a dermatologist to see what my plan is.

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Becky, Volunteer Mentor | @becsbuddy | Jul 24 9:14pm
In reply to @chuckobe1 "I was diagnosed with Mucous Membrane Pemphigoid 2024 and went to specialist at Penn, Dr. Werth,..." + (show)
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I was diagnosed with Mucous Membrane Pemphigoid 2024 and went to specialist at Penn, Dr. Werth, dermatologist. Cornea specialist has seen nothing ocular. Was doing great to start on 25 mg dapsone 3x/ day but frequent lab work required. Got lazy with strict diet of noon acidic foods, crunchy foods, tough meats etc and now am using costly, custom made oral trays with Floucinoide steroid gel. Trays are delicate and I hope I have not harmed them. Best of luck. Stick to a non-irritating diet and stick a regiment of daily good teeth/gum care by yourself and poofessional every 3 months if necessary.

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@chuckobe1 Welcome to Mayo Clinic Connect! And great advice, too!

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ali119 | @ali119 | Jul 24 10:14pm
In reply to @becsbuddy "@chuckobe1 Welcome to Mayo Clinic Connect! And great advice, too!" + (show)
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@chuckobe1 Welcome to Mayo Clinic Connect! And great advice, too!

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@becsbuddy thank you. I am on dupixent and 2 different mouth medicine. Its been hard not eating my food. Hope I heal soon.

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darden708 | @darden708 | Jul 26 4:36pm

My Dermo did help me. I had 3 different diagnosis. I got a referral to an oral surgeon. He was out of my health care and was super. He explained whay i had and the test I could have. After talking with him I decided he was right with his diagnosis. He made mouth guards and have me use Clobetasol in them. The best part was he explained everything to me, what i had, test i could have and how to take care of my mouth. That helped so much. If your first Doctor isn't helping or they just don't fit for you, CHANGE. It is best thing you can do. I am doing so much better. Good luck. Doctors can make a huge difference i you and your healing. Darlen

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ali119 | @ali119 | Jul 26 5:33pm
In reply to @darden708 "My Dermo did help me. I had 3 different diagnosis. I got a referral to an..." + (show)
Profile picture for darden708 @darden708

My Dermo did help me. I had 3 different diagnosis. I got a referral to an oral surgeon. He was out of my health care and was super. He explained whay i had and the test I could have. After talking with him I decided he was right with his diagnosis. He made mouth guards and have me use Clobetasol in them. The best part was he explained everything to me, what i had, test i could have and how to take care of my mouth. That helped so much. If your first Doctor isn't helping or they just don't fit for you, CHANGE. It is best thing you can do. I am doing so much better. Good luck. Doctors can make a huge difference i you and your healing. Darlen

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@darden708 thank you for that information. My dermatologist is helping me my Periodontics doctor referred me to a dermatologist. I keep seeing everyone doing mouth guards with medication. I go back in August I definitely will ask about it. Glad you are doing well.

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darden708 | @darden708 | Jul 26 8:28pm
In reply to @ali119 "@becsbuddy thank you. I am on dupixent and 2 different mouth medicine. Its been hard not..." + (show)
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@becsbuddy thank you. I am on dupixent and 2 different mouth medicine. Its been hard not eating my food. Hope I heal soon.

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I could not take dupixent. I had a bad reaction to it. I put my toaster away. You learn what you can and cannot eat. It is just accepting it. It is not so hard now.
I left out "my dermo did not help me". Opps!!
Good luck. It gets ok. My Oral Surgeon says using the mouth guards and Clobetasol can make me good. At my last Dental appointment, my Dentist said my mouth looked good and gums were really better. My oral Surgeon is 73 and semi retired. He is very well thought of and very knowledgeable. Doctors, very important. It can take a while to fine a good one. Good luck and think positively.

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