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Update on my year-long flare

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Crohn's Disease
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Posted 1/12/2012 4:21 PM (GMT 0)
Actually, it's been 13.5 months. It's getting old. rolleyes Anyway, started Cimzia last February. Had a month of improvement (but never remission), then started going downhill (but bleeding stayed away). Found out my gallbladder was full of stones, so had that removed in July. Still no improvement in Crohn's stuff, so we split the dose to one shot every 2 weeks (norm is 2 shots/4 weeks). No improvement. Had another scope in October showing active disease throughout colon. Added azathioprine. Nothing. Still getting worse. Saw an integrated (holistic) MD in December out of desperation. Started several supplements and an elimination diet. No improvement. Only thing that slightly improved the number of BMs (but did nothing for the pain) was adding psyllium husk. Then I increased the dose and the bleeding came back. I dropped back down and am staying on 1/day (500mg).

Anyway, that's the back story. Here's the new plan. Switching Apriso for Lialda. Staying on aza. Switching Cimzia for Remicade. My first infusion is tomorrow, if insurance will get on the ball and approve today. I am putting a LOT of hope in the Remicade. I know it works wonders for so many. My GI is skeptical, due to my non-response of Cimzia, but I'm going to prove him wrong. Any tips for my first infusion?

Posted 1/12/2012 4:29 PM (GMT 0)
You poor thing! Doesn't it always seem this DD always finds a way not to respond to meds?

Any way, it's been awhile since I've been on Remi but I think I can offer you up some advice. Since you'll be there for a time, take reading material or puzzles or something to keep you occupied. Depending on the time you might also want to take some snacks and a drink along. I remember making the mistake of skipping lunch and by the time the infusion was over I was starving!

Good luck, I hope the Remi gives you the remission you are hoping for.
Posted 1/12/2012 4:44 PM (GMT 0)
Thanks. It's right after lunch, so I should be good there, but I'll make sure I take my water bottle. I have books on my iPhone, so those will come in handy.
Posted 1/12/2012 6:42 PM (GMT 0)
Good luck Stephanie!! Hope the Remicade does the trick for you, you sure need a break. Hugs!
Posted 1/12/2012 7:48 PM (GMT 0)
No tips for the remicade, just want to wish you the best!
Posted 1/13/2012 1:59 AM (GMT 0)
I was on Remicade before and it did help for some time. Not that it helps but I think I was having significant issues that wouldn't be fixed by the Remicade but I do believe it worked well. I do recall when they hooked me up they gave me some sort of allergy med or something...benadryl? That stuff would knock me out and every time I went I would fall asleep and wake up with just a bit of time to spare. The nap was always awesome and cut the time in half. : )

Good luck with the Remi.
Posted 1/13/2012 4:26 AM (GMT 0)
Good luck with Remicade! I hope it does the job.
Posted 1/13/2012 8:25 AM (GMT 0)
The infusions are easy. I get my 3rd next week. They've made me very tired the day afterwards and i get a burning in my stomach with it. A friend i have has no sode effects. I bring breakfast and schedule mine in the morning. I fall asleep, bit bring something to do in case... Two hours is a long time to be bored. Wear comfy clothes if you can (i cant stand anything tight around my stomach right now tho).

Good luck and i hope it works for you!!
Posted 1/13/2012 2:27 PM (GMT 0)
I feel your frustration. Good luck with the Remicade.
Posted 1/13/2012 9:52 PM (GMT 0)
Well, insurance hasn't approved yet, so I'm rescheduled for Monday. Not happy.
Posted 1/13/2012 10:44 PM (GMT 0)
Im sorry i hope they approve you and you get in soon! I know i counted down the days for my first, and for each infusion after that..

Check with your doc about the remistart program. The company that makes the drug reimburses you to help pay for the infusions. It technichally all goes tp ur doc but they give a good amount, esp if your ins deductible is high like ours, it def helps.
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