Thank you everyone for your kind words and prayers. It means a lot. Everyone is so nice here. I am so thankful that I found this board. It feels good to talk to people who are actually are experiencing some of the same things I am.
I visited livingwithuc.com and signed up for their newsletter. I think this website is actually run by Centocor the makers of remicade. Anyways about a week later I received an email from Centocor offering help to those who can’t afford the out of pocket expense. I called the number and the program is only for people who haven’t started receiving treatment yet, which seems totally absurd to me. I already had had 2 infusions at this point.
I have already met my out of pocket max (5,500) for the remicade treatments, so this month’s treatment will be picked up 100% by my insurance. So that is some good news!. But in January it starts all over again.
I have applied for Social security disability assistance but they tell me it can takes months to get a decision. And I hear this is very hard to qualify for.
I am still on Imuran 100 mg. My doctor told me it takes about 3 months for it to start working and I just reached that point. As soon as my ins. approves it, I’m being tested to make sure that I’m at the optimal dosage for the imruran, to see if it can be increased w/o being toxic.
As far as the surgery consult, I guess it can’t hurt to educate myself a little more on it. It would probably make me less scared. I think I might wait to find out if we will be moving or not.
Thanks again for all your kind words and for helping me work through this.
Diagnosed with UP in Feb 2005 Developed into UC by Jan 2006
Rowasa, Asacol, Colazal, Entorcort
Hospitalized July-Aug 2007 Pancolitis
Contracted C Diff.
Salumedrol, Flagyl, Remicade, Demerol, Prednisone, Antibiotics
Prednisone tapering currently down to 5mg
Remicade every 8 wks next treatment the week of Thanksgiving:(
Mama to Katie and Jack