Mucus Membrane Pemphigoid

Greetings. I have the same diagnosis which I received from my dermatologist about 3 years ago. Worst conditions are intraoral with some occasional skin flares but they have really become minor with treatment. My current medication is Dapsone which has worked pretty well if I behave with my diet. Rough or hard foods will not be your friend. Highly acidic food and drink is bothersome. I don't want to intrude on your relationship with your dermatologist so I'll wait to hear why they recommend. I'm 72WM, retired dentist.

@glongdmd thank you for responding. This is so scary im only 59. I will let you know what they say. 🙏

I am 83 and have MMP in my mouth, eyes and nose. I had 2 gum biopsies to determine the diagnosis. I was first put on Azathioprine. I am terribly allergic to yellow dye and yellow compound. I have not be able to take the other meds usually prescribed. I was put on Dapsone. As I got up to 50 mg I had symptoms of A Fib. Even at low doses I have problems. I am currently on Dapsone 25 mg every other day. I also Tacrolimus mouth rinse 2 x a day. I am fortunate to have a non aggressive form of MMP. It is a very scary condition. I see the top dermatologist on pemphigoid at the university. I see an ENT a couple times a year. I also see 3 Opthalmologists as I have bands in my eyes. The very best of luck.

@audreyh thank you for your response. It is very scary thank the lord I only have it in the mouth. I see a dermatologist Monday so we will see what she says. My healing prayers sending to you.

I have had it for years. I went to a University Dental Clinic for a biopsy diagnosis and treatment. I got it under control and finally remission using primarily Fluocinonide in mouth trays, or Dexamethasone mouth rinse if really bad, and nystatin mouth rinse to prevent a yeast infection in my mouth from using a steroid (Dexamethasone). A knowledgeable dentist is important when you first start treating it. Many dentists aren’t.

@ali119 Thank you. Good luck with your appointment.

@susie2 Thank you my Periodontics is the one who discovered it as I was having really bad bleeding in my mouth. I know when I brush my teeth it feels like I'm taking a razor blade to my gums. I really don't want to take steroids. I already at 59 have osteoporosis and now this. This getting older is not fun.

It is an Immune related disorder . It is very improtant to have a correct diagnosis which might inlcude Biopsy ,blood work up etc . Step by step approach is very crucial for proper care .Start with a medical doctor who is Immunologist and coordinate with near by Department of Oral Medicine of University or School of Dentistry for treatment. If no Dental School is nearby then a knoledgeable Dentist is necessary for long term managemnet of this kind of conditions . Latest recommended treatments often includes
1)Fluocinonide in mouth trays
2)Dexamethasone mouth rinse
3)Antifungal such as Flucanozole ,Nystatin etc
4)Any chronic irritation source must be mitigated such as broken or chipped tooth ,broken crowns etc

@adental Thank you for replying. I go to a dermatologist tomorrow. My Periodontics us the one who did my biospy and sent it to the labs and it came back positive. I will how it goes tomorrow.

I have Pemphigus vulgaris. This sounds very similar. I started three months ago on cellcept and could not manage the Side effects and changed to Myfortic. I am having limited benefits from it. Dentists and periodontist never had a clue. Diagnosed with a punch biopsy. Done by ENT. The food issues are difficult to manage but being faithful to bland soft things is important. Hoping for the best.