Going off Remicade -so many questions....

It's been a while since I've posted anything, been in remission for about 4 years now, thank God.

Unfortunately due entirely to finances I am going to have to stop my Remicade. My Dr advised me not to from the beginning, citing I might develop antibodies and would not be able to get back on it in the future. In light of this I've been struggling as best I could to stay on it, but I just can't swing the $5,000 deductible on my insurance this year.

Does anyone have any words of wisdom/ advice/ encouragement for me??

Thanks!!

I thought my deductible was $1000. Had my first infusion of the year last week and they contacted me like 3 days before the infusion saying I had to pay $1500 before they could mail it out.

Had to just bite the bullet and pay it all, not sure why it was over $1000 but need to call my insurance to figure this all out. I also have started the remistart application process which I never did last year because by the time I had started taking remicade I had already reached my deductible so it was "free"

I guess I've already reached it for this year though so that's nice.

Remicade is just starting to really work for me and I feel better than maybe I ever have. I would be so scared to go off it right now.

I thought that Remistart covered all of the co-payments except for $5?

http://www.remistart.com/for_patients/patient_rebate_program_for_remicade.html

" This program is only available to individuals using private or commercial health insurance to cover a portion of their medication costs, including plans available through state and federal health care exchanges. This program is not available to individuals who use any state or federal government subsidized healthcare program to cover a portion of medication costs, such as Medicare, Medicaid, TRICARE, Department of Defense, or Veterans Administration. Patients confirm that they will not seek reimbursement from any of these programs or from pharmaceutical patient assistance foundations and accounts such as a Flexible Spending Account (FSA), Healthcare Savings Account (HSA) or Health Reimbursement Account (HRA)"

Basically anyone who has Medical Insurance is covered for this rebate program unless you have government assisted insurance like Medicare/Medicaid.


If you do need to stop the Remicade then I'd recommend 6-mp/Imuran to prevent antibodies from developing. This is a common practice in other countries, people do not stay on Remicade unless they are symptomatic.

Hopefully the Azothioprine works as maintenance. Also it should make it easier to restart, because Azothioprine should prevent antibodies.

good luck

Thanks so much all for the suggestions.

My Doctor (whom I have to travel to Miami to visit - no one in Guatemala knows how to treat UC) has asked for labs to check if my "azathioprine is at therapeutic levels" - if so she'll allow me to suspend the Remi.

I'm so sad and many tears have been shed, many prayers said. Anxiety levels are rising, which obviously is counter productive.