Mucous Membrane Pemphigoid

Posted by emmalouise @emmalouise, Jul 11, 2016

Need information on Mucous Membrane Pemphigoid.

Interested in more discussions like this? Go to the Autoimmune Diseases group.

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?

REPLY
@alysebrunella

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?

Jump to this post

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.

REPLY

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

REPLY
@johnbishop

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

Jump to this post

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.

REPLY
@emmalouise

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.

Jump to this post

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.

REPLY
@terrydclaar

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.

Jump to this post

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.

REPLY
@johnbishop

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.

Jump to this post

Thanks for your prompt reply John.

REPLY

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

REPLY

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.

REPLY
@jimhaz

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.

Jump to this post

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?

REPLY
@johnbishop

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?

Jump to this post

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.

REPLY
Please sign in or register to post a reply.
  Request Appointment