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Oral Mucous Membrane Pemphigoid

Posted , 5 users are following.

Mumsy
Mumsy

:?: Recently diagnoised and I have so many questions. Do I need to see a Rheumatoligist if I have leg pain along with the mouth lesions??? Will taking Vitamin D supplements help? Knowing that Vitamin D comes from sunshine, I have avoided the sun for over 20 years due to basal cell carcinoma and squamous cell carcinoma skin cancers that I have had. I go toa Dermatoligist every 4 months for complete check up and most of the time she finds new skin cancers. Does this have anything to do with Mucous Membrane Pemphigoid? No one seems to know much about this disease except that it is an autoimmune disease that is hard to treat.

0 likes, 4 replies

4 Replies

  • Andii
    Andii

    Posted

    Hi I am waiting for clarification on diagnosis but local hospital consultant thinks its pemphigoid, seems your case is much more complicated than mine. My GP has agreed to refer me for a second opinion as I might not have pemphigoid, it could be lichen planus for example or something to do with my thyroiditis. I may also be referred to Rheumatology as CPD is also an autoimmune disease. Are your eyes affected ? I'm a bit concerned about my eyes having read-up quite a bit and saw some pretty harsh photos of cases.
  • gina42691
    gina42691

    Posted

    My mother was diagnosed with Mucous Membrane Pemphigoid and is dealing with the mouth lesions, gum deterioration, bleeding, etc. We have been unable to find anyone with this condition and local Dr's are not very helpful. Does anyone have information or same symptoms?
  • mrsmop
    mrsmop

    Posted

    I have bullous pemphigoid and also oral pemphigoid. I feel as though I have reached a point where I know more than the doctors
  • mrsmop
    mrsmop

    Posted

    I am now seeing a Consultant Dermatologist who knows what he is talking about and as soon as he saw me, he told me that I have Bullous Pemphigoid [confirmed by biopsy] and Cicatricial Pemphigoid, hence the blisters in my mouth and occasionally my eye. I already see an Ophthalmologist, so that is 'under control'. He says he will refer me to the 'Oral guys' to deal with teeth He also told me that Cicatricial Pemphigoid is very difficult to treat.

    I am now being weaned off the Prednisolone and have been on Methotrexate for about 6 weeks. We haven't found the optimum dose yet. I am due to see him next week. I saw the Ophthalmologists yesterday. The Dermatologist wants to refer me to a Rheumatologist too.

    The worst part of all this? Finding a parking place at the various hospitals!

    I do feel as though I am on my own. It is a rare disease, so GPs never see it, so don't know how to treat it and are reluctant to refer.

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