Oral Mucous Membrane Pemphigoid

Posted , 5 users are following.

This discussion has been locked due to a period of inactivity. Start a new discussion

:?: 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

  • 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.
  • 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?
  • 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.


Join this discussion or start a new one?

New discussion

Report as inappropriate

Thanks for your help!

We want the forums to be a useful resource for our users but it is important to remember that the forums are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the forums is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.

newnav-down newnav-up