A Pemphigoid story
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. :(
Find people with Pemphigoid through the map. Connect with them and share experiences. Join the Pemphigoid community.