Mucus Membrane Pemphigoid

Greetings. I am a retired periodontist and also have pemphigus vulgaris although I am arguing with my dermatologist who thinks it is bullous pemphigoid. Minor difference in proteins that are attacked. My biopsy was a skin bulla that popped up the morning of my appointment with her. The oral problems are far more prevalent and painful. Currently taking Dapsone which works OK and has minimal side effects. Have been asking about Rituximab but my docs seem a bit wary of the infusion treatments. And, yes, your diet will look nothing like what you were used to. I eat a lot of yogurt nowadays.

@glongdmd Thank you they put me on dupixent. I have to wait for them to try to approve it because it is very expensive. Gave me medicine to swash and spit. This is my dermatologist I asked her if she seen alot of this and she said in her residency she saw alot. So we will see how it goes. Sending healing prayers🙏

I had Buluios Pemigoid in blisters over the trunk of my body and my arms and hands. 60 mg of Prednisone worked and Duplixent. But the 60 mg of steroid gave me Cortisteroid induced Myopathy and am now crippled in mu legs with unbearable pain. The doctor didn't tell me anything about tapering off of Prednisone. It can be a great drug but it can also cripple you if taken too long. It is also painful in my hips down to ankles. Hospitalized several times from the pain. Don't let a doctor put you on a Cortisteroid then forget about tapering. They don't teach tapering in medical school!!!!

Thank you for your response. It is only in my mouth for now. They put me on two different mouth washes Nystatin and dexamethasone. They are trying to get me on duplixent but waiting for the insurance to approve it. Hope you get better 🙏

@adental I agree with exactly everything that adental said. It is like I wrote that post. My MMP is in remission now, but very rarely , I apply a little Fluocinonide with a Q tip to keep it in check. It does take time and you need to communicate MMP info to your dentist as he/she may not know that much about it. I had a biopsy done at a university oral clinic and continued appointments every few months for 2-3 years to get it into remission, plus regular visits to my dentist. Try not to get discouraged, you can get it where it’s no problem. One warning: I started a new drug (Brinsupri) to treat a lung disease which has a common side effect of causing gum gingivitis. It restarted a little gum bleeding again, along with some other side effects, so I stopped taking Brinsupri.

I have it to in mouth just waiting for doctors appointment

Just got diagnosed with MMP after biopsies. Been dealing with this since March. Suspect it was triggered by blood pressure meds cause it started a few weeks after starting them. Went round and round with Drs who kinda shrugged off when I complained. Finally found a great periodontist. Started on oral steroids for about a week but don’t see much progress. Gums are in pretty bad shape. Still getting blisters across the whole top gum and those steroids are nasty tasting!!! Follow-up next week to see what next treatment will be. Don’t want to do oral steroids. Have seen other meds mentioned on here that I will ask about at my appointment. Only good thing is I have lost 10lbs in the last ten days from limited eating. Living on scrambled eggs, oatmeal, cottage chees,yogurt and protein drinks mostly. At least now I feel like I have someone who understands what I am going thru. Just turned 66, read that this is called old people disease!!

@mlapp

MMP is not an old people's disease!

Here some overview:

Mucous membrane pemphigoid (MMP)
https://www.autoimmuneinstitute.org/autoimmune-resources/autoimmune-diseases-list/mucous-membrane-pemphigoid/