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Pre Infliximab/Remicade advice

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Crohn's Disease
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Posted 4/6/2011 10:07 PM (GMT 0)
Hiya,
Just a quick post to ask for a little advice. I start infliximab (remicade) on Friday and have to admit after reading quite a few posts I am more than a little scared. I realise everyone reacts differently to new treatments, but wondered if anyone knew if there is a common theme to the usual side effects and had any hints to help get me through the treatment with as much ease as possible. To date I have been what I consider very lucky with my Crohn's, but this year for some reason the steroids prescribed for my flare didn't work in there usual two weeks and actually took two months, I am only just starting to cut them back now. The Crohn's is pretty much on the out, the number of toilet visits is down from twenty to two letting me get some much needed sleep. But the side effects from the steroids (weight gain, over eating, swollen everything, cramp and severe knee pain) is starting to get me down. My hope for the new treatment would be that it heals my two fistulas and helps keep the Crohn's at bay. Fingers crossed.
Looking forward to all your wee tips.
xoxo
Posted 4/7/2011 5:29 AM (GMT 0)
I had my first infusion 2 weeks ago, I was incredibly nervous of having a reaction to it, I am still tired from it. The first 5 days after all I wanted to do was sleep, but it's gotten better. I had mine done at an infusion center, I had tv shows put on my phone so I could watch, brought headphones, and my cross-stitching, along with some snacks. The center I was at actually provided all the snacks/drinks for us, but I was grateful I brought crackers as I got really nauseous the first hour, then really really hungry the second (they had rice krispy treats and they were sooo yummy!) They premedicated me with IV benadryl and zofran, made me sleepy. I haven't been on it long enough to notice a difference in it helping my CD, but I am hopeful. I've heard many many good things about this drug. I have my 2nd infusion tomorrow.
Posted 4/7/2011 11:25 AM (GMT 0)
I started about 2 months ago and have had 3 doses. I didn't have any side effects aside from being extremely tired the first day from the infusion. I get premed'ed with Decadron, so I get really wired and cranky from the steroids, while being EXHAUSTED from the Remicade. Weird feeling.

I have 2 internal fistulae which was the reason I was on it. I had one that felt like it abscessed in my abdominal wall and within days of starting Remicade, the abscess went away. I had an MRI follow up to see the state of the fistulae and they had halved in size in 6 weeks, as they were a little over an inch big to start. So I was doing great until this wekened when it feels like the abscess came back. :( So I'm meeting with a surgeon tomorrow.

But honestly, the guts are GREAT and if it weren't for the abscess, everything would be perfect...
Posted 4/7/2011 8:37 PM (GMT 0)
Thank you so much for your comments, you have managed to put my mind at ease a little. I will also be able to prepare and take a small goodie bag with me just in case, along with a selection of things to try and keep me occupied. It would be great if it could heal my two fistulas, as they sometimes proove to be very embarrassing. Thanks again.
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