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.
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.
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.
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.
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.
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 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.
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.
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.
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.
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.
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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?
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4 ReactionsDr. 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.
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3 Reactions@jimhaz Can you let us know how your MMP appointment at Mayo goes?
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2 ReactionsHi Jim @jimhaz, Just thought I would check in with you to see how your Mayo appointment for MMP. Hoping all is well.
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1 ReactionI 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?
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Like -
Helpful -
Hug
2 ReactionsSince 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.
-
Like -
Helpful -
Hug
1 ReactionHi 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.
-
Like -
Helpful -
Hug
2 ReactionsThank 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.
-
Like -
Helpful -
Hug
1 ReactionAbout 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.
-
Like -
Helpful -
Hug
1 ReactionHi 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.
-
Like -
Helpful -
Hug
1 Reaction