Story about Pemphigoid .

A Pemphigoid story

Dec 2, 2


I have Bullous Pemphigoid. I have had blisters on my back, stomach, feet, chest, face and in my mouth/gums. It got really bad in my mouth and before being diagnosed and I began treatment, was almost unbearable pain/itching while on my back. I was on Prednisone, Cellcept and have done Rituxan. I am off prednisone but still take 2000mg of Cellcept. I thought after the first 2 Rituxan treatments I was going into remission but a recent BP180 test proves that my numbers have gone back up again. Disease is currently not giving me too many lesions. I had hoped to be off Cellcept after the Rituxan but now I will have to stay on it. 

Update since first publishing: I now have had 3 Rituxan treatments and am down to 1500mg of Cellcept/day. I have not had lesions in 6 months although my mouth is still tender and gets torn up easily if I eat to many rough foods. I saw a specialist in Boston and he recommends Rituxan every 6 months for a while and then I can start to space out the infusions to every 7 months, 8 months and so on. I am very lucky to be able to do Rituxan. Now I just pray that my insurance will continue to pay it. And, I feel like I can never leave my job because a new company may not have such good insurance. :(

 

 

 

Know someone who should read this story? Share it

0 comments

Login or register to leave a comment


Couple and Pemphigoid

Is it easy to find a partner and/or maintain relationship when you hav...

Pemphigoid diet

Pemphigoid diet. Is there a diet which improves the quality of life of...

Pemphigoid prognosis

Pemphigoid prognosis

Is Pemphigoid hereditary?

Is Pemphigoid hereditary?

Pemphigoid causes

Which are the causes of Pemphigoid?

Living with Pemphigoid

Living with Pemphigoid. How to live with Pemphigoid?

Pemphigoid cure

Does Pemphigoid have a cure?

Celebrities with Pemphigoid

Celebrities with Pemphigoid