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    mucous membrane pemphigoid
    gangyof4 posted:
    I was just diagnoised with pemphigoid. wanted to see if any one out there has this and what treatment they are doing am doing a steroid cream on them but not much luck in getting rid of it . and my gums hurt so bad thanks gangy of 4
    MarkMHB responded:
    Dear gangyof4,

    Mucous membrane pemphigoid is an autoimmune condition, so most therapies involve the use of immunosuppressive drugs. Corticosteroids are the traditional mainstay of treatment, but other immunosuppressants, such as topical tacrolimus, are sometimes used off-label to some benefit. Serial trials of different medications are often helpful, because the quality of response to these drugs is sometimes unpredictable, and testing a variety is more likely to arrive at an optimal response.

    In any case, treatment of oral manifestations of pemphigoid are best managed by an oral pathologist. You can search the directory of the American Academy of Oral and Maxillofacial Pathology to find a certified member:

    Be advised that as high as 25% of patients with oral pemphigoid will develop eye involvement, so it is important to maintain close oversight by an ophthalmologist as well.

    Hope this helps...

    Mark Bornfeld

    Brooklyn, NY
    DarlaGH responded:
    Hi, My gum doctor says I have pimphigoid. I had a biopsy done yesterday. He is pretty sure it is pimphigoid though. I am doing the steriod cream as well. My next visit he will fit me with trays to wear while using the cream. My gums have been hurting since October of last year. I'm just now getting a name for what ever this is. I know so little. Would love to have someone to talk to.

    Thanks, Darla
    donnat10 responded:
    I was diagnosed at the age of 23, I am now 44. It started off in my mouth, so they removed the skin, and sores from the roof of my mouth, and sent it off to be tested. I had to wear a plastic dental top piece until it healed. When I went back in they told me I had Mucous Membrane Pemphigoid. He said that it was rare, and I was very young to have it. He gave me pain pills, a mouth rinse, and steroids to build my immune system up. Stress is a big factor when it comes to my outbreaks. I can usually tell if I'm going to have one, because I get this ache feeling, kinda like the flu, but different. I'm a woman, so I have breakouts in the vagina area, and the pain is so bad. I have been to one DR., after another. The mouth thing is rough, but the other part is 100 x. worse, and they don't exactly know how to treat it. I have had pictures taken for research, as well as biopsies. I get sores in my nose, throat, and now my eyes are starting to get weaker. When they first told me, the Dr. said I could go blind by age 50 if they couldn't find a cure or something to avoid a breakout. I was married to a man in the Army so I had pretty good medical coverage. I'm divorced now, and medicare doesn't pay but so much, and with medicare there is no dental, or vision coverage. My DR is trying to get Medicare to pay something because it is a autoimune blood disease...sorry my spelling sucks. Just know you are not alone. I was told it was passed by a female gene, and more women have it than men, but you hear so much stuff. One Dr. will tell you one thing, and you'll go to someone else, and he will tell you something oppisite. I hope your doing ok, and my message has been of some help. Even though it's rare, you are NOT alone!!!!! Good luck!! donna
    IHRABIDHM responded:
    Hi, I'm so glad the two of you with MMP posted. It is so rare and I have not found anyone in my state with the same diagnosis. I was just diagnosed but have had nasty outbreaks for the last year. Your gums hurt so bad, but as Donna said, when it moves south it is way worse.

    I use a topical steroid that helps alot. It is a Betameth dip, .5% that the Dermatologist recommended. They just settled on a treatment plan for me, I'm lucky to have three great doctors who are working together, and I'll start Dapsone next week. I also take Humira for Rheumatoid arthritis, which I've had for 22 years.

    Does anyone have experience with Dapsone? How are others doing with getting the disease under control? My RA took about five years to really get a treatment that worked for me, I guess I expect a similar experience here since both are autoimmune....

    Any insight is appreciated!
    MMPINFO replied to IHRABIDHM's response:
    I was fortunate that my Periodontist remembered a discussion in Dental school .........and as soon as she saw my gums "shredding" as she called it, she said it was probably an autoimmune disease. She took a biopsy of the gum and sent it to a special lab in N.Y. It came back as Mucus Membrane Pemphigoid. She warned me that it meant I would have to get several doctors working together and stay on top of it. I got on the computer and found a Dr. Sergei in So. CA. who has been involved w/ the disease for many years. I made an appt. went down there and he said I was borderline Pemphigoid.......but I had it orally..............not systemically. He changed the cream that the Periodontist gave me and gave me Clobetasol Propionate Gel 0.05% which he said was a higher dose of steroid to put on my gums. The problem is that using it for any length of time can cause many kinds of problems, Glaucoma, Cataracts, diabetes.....etc. The gel has helped my gums essentially heal .......and I go to the Opthamologist to check on my eyes (the disease can cause scarring and blindness & needs to be watched.) If I get any of these other side effects, I will deal with them if and when they come. I have no choice to keep my mouth proactive, line up doctors that have heard of the disease ........and realize that it isn't the disease that will hurt or kill you, it is the medication involved that is the true problem.
    Just sayin guys,
    mmpdaughter replied to MMPINFO's response:

    My mother was diagnosed with MMP four years ago. She has had the sores in her mouth, nose, and vaginal area. Her nose bleeds were severe, but have now subsided. She has been treated with steroids, Doxycycline, Fluocinonide, dental paste and mouth washes. She has been treated at the Marshfield Clinic in WI, and at Mayo. She is contemplating trying Dapsone, but is worried about the side effects. If anyone could please let me know how Dapsone is working for them, I would greatly appreciate it. My mother does not have a computer, so I am helping her with this. She would desperately love to be in contact with people who are dealing with this disease. Thank you!
    Amelia_WebMD_Staff replied to mmpdaughter's response:
    Hi mmpdaughter,

    I am sorry to hear about your mother's health and welcome you to the board. To get a better response in the future, try to avoid posting your question/comments on an older post like this one. Instead, start a fresh new discussion on the board and you should find more feedback.

    Here is a link to a WebMD Overview on MMP that has different organizations with their phone numbers and web addresses. Maybe you could contact them for more experienced information as well.


    I wish you and your mother the best in health and happiness. Hope to hear back from you soon!
    Best Wishes! Amelia
    AnEnglishman replied to mmpdaughter's response:
    I have only been diagnosed for 5 months and have attended about 4 different clinics checking out aspects of this.

    I started off on mouthwashes (predsialone) and have been on Dapsone now for three months building up from 50mg then to 100mg and briefly to 150mg. I say breifly as I have my blood tested every 2 weeks and my levels of Hemoglobin plus other things that they dont tell me abou anyway my hemoglobin was low so they pulled me back to 100mg per day my nose bleeds have stopped though I get "crusting" all the time I was affected on my penis and anus, I now have no problems in that area for about a month

    my eyes are clear so thats a blessing

    I am a 60 year old man we get all this on the NHS here so I am lucky have read a great deal about Dapsone it has bad side affects having your blood tested is important.

    Hope this helps.
    ealaso01 responded:
    My mother was diagnosed with oral pemphigoid after 1 year of painful mouth sores. Diagnosis took 2 dermatologist and an oral surgeon- only one of the three was able to correctly biopsy and work her up. As a physician (ER trained) I spent hours researching pubmed and other medical websites. Because many with this condition have no medical members of the family to do research for them- I decided to share a little about what I have done to help her, in hopes that it may be helpful for others.

    First, I sent her to a very well respected and academic dermatologist at University of Louisiville. He did a biopsy and battery of blood tests. She was diagnosed with a monoclonal gammopathy (related to multiple myeloma) and sent to an oncologist who is checking her for elevations of this abnormal protein every 3 months- they have remained stable (she does not have multiple myeloma- just a precursor in her blood). She was also started on nicotinamide/tetracycline (no real effect), steroids, and oral steroid mouth plates (this worked the best). She is allergic to sulfa- so no dapsone and I am very hesitant about immunosuppressants given her precursor to multiple myeloma. I'm a big proponent of IVIG for pemphigoid- but most insurance companies would not pay for this treatment.

    Perhaps the thing I most want to mention- I decided after hours of research- to persuade her to become gluten free. After 3 months of gluten free diet her blisters have slowed and she is a firm believer that somehow this is related- as I am. She has not been diagnosed with celiac disease (blood tests negative and she did not have a small bowel biopsy). However, what finally convinced her was while baking homemade bread one day she experienced what she called an "allergic reaction" in her mouth with numerous blisters resulting immediately. Since that day, and her gluten free diet she is much improved.

    Eventually I believe all diseases will be found to be related to food/allergies/ph balance of the body- but science has a lot of catching up to do. If you suffer with oral pemphigoid- my main suggestion would be to go to an academic dermatologist with experience treating the disease (may take 2nd and 3rd opinions- doctors come in many forms). Also, make sure you try local oral steroids (not systemic if you can avoid this)- either injections by dentist or oral surgeon or mouth trays. Next, attempt to become gluten free for 3-4 months (this requires alot of research and strict reading of all labels). Perhaps others can achieve remission like my mother has. My worst fear was that it would progress further into the airway or into the eyes and cause blindness (50% of cases get worse in this way). Good luck to everyone, it's been a long road for us!
    ealaso01 replied to ealaso01's response:
    One more thing to think about. As a physician- I understood that the treatments suggested by her physicians such as steroids and immunosuppressants were all designed to suppress her immune system. Obviously, my question was what was the trigger/culprit activating her immune system. In her case- I initially was convinced it was something she was eating since the disease started in her mouth. And now, after 1 year and multiple treatments, I am convinced it is an undiagnosed allergy to wheat/processed food. Gluten free works for her and I hope it can work for others. Please let me know if this works for you so we can help others. There is a disease called dermatis herpetiformis that sometimes is misdiagosed as pemphigoid- even after a biopsy. You may want to check out that disease too.
    AnEnglishman replied to IHRABIDHM's response:
    Been on Dapsone for 6 months up to 150 mg per day have to have regular blood tests but MMP is getting better about 30%
    ritaj52 replied to donnat10's response:
    Mu pemphigoid started in my mouth. I went to a recommended dermatologist and took Dapsone. IN five weeks my blood count went from 12.5 to 9,2. I stopped the med immediately and took iron for a few weeks. My blood count returned to normal. I found the doctor that has changed my life. After almost three years on a regiment of different mouth creams and srong doses of cellcept three times a day. I believe for awhile, the dose was 1000mg three times a day. I am diabetic so I could not take a lot of drugs that wre cheaper. Cellcept is very expensive, but I have been in remission foro over a year now. I prayy daily to stay in remission. There is no cure.
    ritaj52 replied to mmpdaughter's response:
    I have MMP. My first doctor treated my with Dapsone . He warne me they would test my blood with a special test in five weeks . The hospital had to run this test. MY blood count went from 12,8 to 9.2 in five weeks. I changed doctors and went to a specialist who is very well known. Mayo works with this Doctor. I took cellcept 1000 mg three times a day for a long period. In all, I was on cellcept for over three years. I also used a variety of creams on my mouth and other areas. I have been in remission for over a year and a half. The disease is not crable. I do believe I got this disease from working too many hours and not enough rest. I have diabetes and there were a lot of the meds that I could not take.
    ritaj52 replied to AnEnglishman's response:
    See if your doctor will try cellcept 1000mg three times a day. Then as the sores clear up, the doctor will adjust the dosage. I have been in remission for ovr a year and a half. I took cellcept over three years along with different ceams and pastes. I could not take dapsone. I had adverse reactions. Blood hemiglobin went way down in just five weeks Blood count went from 12,9 to 9,2. Not good Good luck!

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