Not Responding To Remicade Anymore

Introduction:

My names Erin, I wrote a complete background on myself in my last post (can be found in young people section) so i won’t go into much detail here, feel free to check it out.

My Symptoms:

rather crampy, loose stools, generally crappy feeling, the usual.

My Story:

Ok, so I posted a few weeks ago when I was just starting into a flare. I talked to my doctor and he thinks that I am just not responding to the remicade anymore for whatever reason, I guess that happens sometimes, so i need to change meds, no big deal right? So he decides to put me on humira.

I have done quite a lot of research on it and can’t decide weather to be excited about being on it or scared of it because apparently its like some miracle drug but also rather painful. Anyway my doctor went through the process of getting it approved with my insurance and apparently it was denied. Now we have to try to appeal it but who knows if they will.

Normally I’m fine with complications and what not, this has taught me to be very patent and understanding with these things but this is a little different. I seem to be running out of choices for meds to go on. during my 15 day hospital stay four years ago I went through them like TP. it turns out i have bad reactions to most of them (seizures, hallucinations, ext.). so if this isn’t approved I’m not sure if there will be anything else to try before surgery. I mean I have come to terms with the fact that ill probably have it eventually but i was hoping it wouldn’t be during the school year. And I’m not quite ready for something like that, its no small procedure.

I’m really scared myself but i cant really tell my family because they are so worried already and that will only make it worse for them and therefore worse for me. I am very thankful for sites like this that allow us to talk to people who understand.

Any advice for me? anyone been in the same situation, if you have how did you survive it?

Colitis medications:

In chronological order:
sulfasalazine, worked for a long time then stopped
asicol, didnt work
something i cant remember the name of, made me halucinate
tacrolimus-transition drug for 6MP, gave me seizures
remicade, built up immunity

plus pregnizone on and off

written by Erin