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My Mom Has Cicatrical Pemphigoid With Eye Involvement...

She was diagnosed over a year ago and after trying steroids (caused psychosis at high doses, but did help), Dapsone ( caused anemia at high doses, but did help), methotrexate (hard to say if it helps at all) and Intravenous immunoglobulin (every other week for the last 7 months) is finally trying Rituxan. She's just taken her second dose (IV) this week. Does any have any experience with this therapeutic regimen? ANyone who had this disease and got it into remission? thanks and God bless.
fluffjackie fluffjackie 41-45 2 Responses Jan 1, 2011

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My mother had this disease when it was unheard of. It is a horrible disease I will be happy to answer any questiobs

Did anything work for her as far as treatments?

Hi



I have just joined this group - I've had Immounoglobulin, Steroids, Dapsone, Interferon, Cyclophosphomide, and something else which my brain has just forgotten plus lots of eye drops etc. They were going to try me with Rituximab if I had a major flare up - so not yet.



You could say that I'm under control but not in remission.

Thank you for posting....I have a questions please...Did you take the Cyclophosphomide intravenously or orally?

My mom ended up getting cyclophosphamide, intravenously. it did not do anything for the MMP. She is still on IV IG and prednisone and is stable but not in remission. Her eyes are ok but her oral mucosae very actively inflamed still.