Mucous Membrane Pemphigoid

Hi @emmalouise, and welcome to Connect! I found some information on bullus pemphigoid from Mayo Clinic: http://mayocl.in/29uCUvy. I'm tagging @gonefishinmt, @johnbishop and @earljohnson5030 as they have all discussed their experiences with this condition.

@emmalouise, can you share the information you've found so far with the group?

Thank you for the information. Mucous Membrane Pemphigoid is a little different than Bullous Pemphigoid. I have it in the mouth and being treated with Clobetasol Gel in mouth trays. I may have to take an oral steroid, which I don't want to do if possible. I was wondering if there were any natural ways to cope with MMP. I recently read about concerns of taking probiotics if you have autoimmunity disorder. I have been taking probiotics for years and now decided to stop and see if that makes a difference.

I'm wondering if anyone is following this discussion? The reason I ask is that I was talking with my dentist this morning and she mentioned she has this condition and a group of her patients are also affected. Has anyone found any treatments that help? I did find a few links that may be helpful for anyone looking for more information.

National Organization for Rare Disorders:
-- https://rarediseases.org/rare-diseases/mucous-membrane-pemphigoid/

National Institutes of Health - Treatment strategies in mucous membrane pemphigoid
-- https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2500254/

Management of mucous membrane pemphigoid
-- https://www.uptodate.com/contents/management-of-mucous-membrane-pemphigoid

JAMA Network - Successful Treatment of Mucous Membrane Pemphigoid With Etanercept in 3 Patients
-- https://jamanetwork.com/journals/jamadermatology/fullarticle/409132

Yes... info on MMP

Hello John, I interacted with you on the Mayo PN group page. My wife has just been diagnosed with Mucous Membrane Pemphigoid. So I am very interested in the disease and any treatments you have found for controlling/managing this situation. Thanks, Terry Claar, Newark, Delaware.

Hello Emma Louise, I hope you are doing well in managing your MMP! My wife has just been diagnosed with Mucous Membrane Pemphigoid. So I am very interested in the disease and any more recent treatments you have found for controlling/managing this situation. Thanks, Terry Claar, Newark, Delaware.

Hi Terry @terrydclaar, I'm sorry to hear your wife has been diagnosed with Mucous Membrane Pemphigoid. I don't have any personal experience with the condition but can share a few sites that may be helpful to learn more about it.

Here is a previous post above that has links that may be helpful - https://connect.mayoclinic.org/discussion/mucous-membrane-pemphigoid-2e577d/?pg=1#comment-263466

Here is a link that was on the NORD site that has some info that could be newer - International Pemphigus & Pemphigoid Foundation: https://www.pemphigus.org/

Hopefully other members can share their experience with you.

Thanks for your prompt reply John.

Has anyone tried turmeric/curcumin or other natural or homeopathic aids for MMP, especially for inflammation and sores in the mouth?
Thanks.

Just recently I recieved a diagnoses of MMP the oral type. Where do I go from here? Had biopsy came back positive. Concerned about eye progression, because my wife is blind, this could make life difficult.