1. < Autoimmune Diseases

Pemphigoid mucosa

Posted by mandy19 @mandy19, Jan 3 8:50am

Anyone out there that has this condition?

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mandy19 | @mandy19 | Mar 12 12:53pm

Yes I have that condition. Mine is oral mmp.

REPLY
barbarajesse | @barbarajesse | Mar 13 7:57am

I had pemphigus 24 years ago in
my mouth, throat and nose. After 4 years of being on prednisone and being infused monthly with antibodies, I found out about Rituxan, a monoclonal antibody originally discovered to treat cancer patients. It was a relatively new treatment so I went to a dermatologist at John’s Hopkins who had success giving Rituxan to his pemphigus patients. He told me I was a good candidate and I would have no side effects which I didn’t.
I went back home and my doctor arranged for me to have Rituxan infusions. After 2 infusions, it started to disappear. I did a second round 6 months later and it went away completely and hasn’t returned. I am so grateful I found out about this treatment and I wanted to share my success with others suffering from this horrible immune disorder. Hope this information helps.

REPLY
1 reply
Mentor
Becky, Volunteer Mentor | @becsbuddy | Mar 13 7:44pm
In reply to @barbarajesse "I had pemphigus 24 years ago in my mouth, throat and nose. After 4 years of..." + (show)
@barbarajesse

I had pemphigus 24 years ago in
my mouth, throat and nose. After 4 years of being on prednisone and being infused monthly with antibodies, I found out about Rituxan, a monoclonal antibody originally discovered to treat cancer patients. It was a relatively new treatment so I went to a dermatologist at John’s Hopkins who had success giving Rituxan to his pemphigus patients. He told me I was a good candidate and I would have no side effects which I didn’t.
I went back home and my doctor arranged for me to have Rituxan infusions. After 2 infusions, it started to disappear. I did a second round 6 months later and it went away completely and hasn’t returned. I am so grateful I found out about this treatment and I wanted to share my success with others suffering from this horrible immune disorder. Hope this information helps.

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@barbarajesse I see that you’ve been a member of Connect for some time but this is your first comment. And a helpful one at that!
Have you been finding Connect helpful? And friendly?

REPLY
1 reply
barbarajesse | @barbarajesse | Mar 13 8:52pm
In reply to @becsbuddy "@barbarajesse I see that you’ve been a member of Connect for some time but this is..." + (show)
@becsbuddy

@barbarajesse I see that you’ve been a member of Connect for some time but this is your first comment. And a helpful one at that!
Have you been finding Connect helpful? And friendly?

Jump to this post

Yes.

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