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Mucous Membrane Phemohigoid (MMP)

Posted by griffin1120 @griffin1120, Feb 6, 2023

Is anyone else suffering from this autoimmune disease. It’s nasty lesions in the mouth & throat, but can travel to the eyes.
Cleveland Clinic prescribed lots of steroids to get it under control & now I swish & spit 3Xs a day - chloridexidrone which keeps it under control. My biggest fear is that it will travel to my eyes causing blindness.
Any one else out there suffering?

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Mentor
John, Volunteer Mentor | @johnbishop | Feb 7, 2023

Hi @griffin1120, There is an older discussion but I'm not sure there are any active members. While we wait for members with experience to respond, it might be worth reading through the discussion. There are some references that may be helpful:

-- Mucous Membrane Pemphigoid: https://connect.mayoclinic.org/discussion/mucous-membrane-pemphigoid-2e577d/.

If you haven't already seen this site, 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/

I know it must be concerning worrying about MMP spreading to your eyes. Have you discussed your concern with your doctor to see if there are things that you can do to keep that from happening?

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