Mucous Membrane Pemphigoid

Welcome @jimhaz. There are a lot of unknowns when you receive a diagnosis and don't know what could be next.
@terrydclaar may be able to share some experience with you. The International Pemphigus & Pemphigoid website has a lot of patient education, treatment and support information that you might find helpful.

Patients - https://www.pemphigus.org/patients/
Treatments - https://www.pemphigus.org/treatments/

Did your doctor provide any suggestions or answers for your questions?

Dr. who found it was an orthodontist and doesn’t treat for MMP. Going to make appointment with Dr. at Mayo Clinic. Was there for another issue in Dec. Got great care.

@jimhaz Can you let us know how your MMP appointment at Mayo goes?

Hi Jim @jimhaz, Just thought I would check in with you to see how your Mayo appointment for MMP. Hoping all is well.

I also have MMP in my mouth, nose and eyes. I cannot take any of the top 3 immunosuppressants: azathioprine, mycophenolate , Methotrexate. I have allergies to yellow dye and yellow compound. Mycophenolate raised my BP to 212/98. Are you taking an immunosuppressant? If so, what color is it?

Since I have MMP in my eyes, nose and mouth, I see an ophthalmologist, dermatologist, and ENT. Azathioprine was ordered first by a rheumatologist. The medication put the pemphigoid in my right eye into remission. However, I was allergic to the yellow compound. I was then put on mycophenolate by the dermatologist. After 5 days, I was in the ER with a BP of 212/98. Then they wanted to put me on Methotrexate, but it is yellow. I am allergic to yellow dye and yellow compound. Next, I will be on Dapsone. I am hoping that it will keep the MMP in remission, especially in my eye. I would love to take something more natural if possible.

Hi there…if you have a compounding pharmacy there, they should be able to call them and see if they can eliminate the yellow dye. May I ask what symptoms you have in your eyes? I am getting sore gums…and teeth issues from
Mmp. Part of the whites in my eyes are bluish gray due to minocycline they said…switched me to Doxy.

Thank you for your reply. I have actually checked with 2 compounding pharmacies, and they cannot do anything for since the 2 meds are naturally yellow. I will be starting Dapsone tomorrow with blood work every two weeks.

About a year ago I developed what looks like 2 clear band in the outer aspect of my left eye. They go from my upper lid to the conjunctiva. So far, they have not interfered much with my vision. Now I have a band in the upper lid, inner aspect of my right eye. If that comes out of remission and starts to grow that could interfere with my vision. The bands adhere to the eyeball. I also have tooth involvement. My gums have been very inflamed. I have a couple of teeth that feel odd if I bite down. I will start Dapsone tomorrow. I am hoping that it will help my gums. I also have MMP in my left nostril. It started with a casual nosebleed now and then. Then I started passing pieces of tissue from my left nasal passage. I am now on vancomycin gel, to each nostril morning and night. That has helpful a lot.

Hi are you starting the steroid rinse?…If so, it seems to be helping..the doc said some people stay on the rinse for life! ( I asked him how long we have to stay on it?

Do you or anyone know if mmp symptoms can be
Having to pull your teeth out? I never had to do anything that dramatic…& it’s hard to find answers.