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Due for Remicade..

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Ulcerative Colitis
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Posted 6/21/2013 10:29 AM (GMT 0)
.. In T-minus 1 hour. I'm quite nervous and anxious because this will be my first infusion to see how it goes.

Let's hope that this Tylenol (500mg) will be good enough without the Benadryl since I forgot to purchase it. blush
Posted 6/21/2013 10:50 AM (GMT 0)
they usually have benadryl on hand at the infusion site in case you react (think reaction is very rare... ) you might want to pick some up after though as you could have a delayed reaction in the next day or two (again very rare).

Good luck, it's not bad getting the infusion itself, just like an IV line if you've ever had that.

My docs. have said for some people it is almost an instant change (next day, feel loads better... ). For me, it was a very gradual improvement, slightly better each day for the first week, got rescue double dose 1 week later (instead of typical 2) and that is when it started to really take hold.

bring something to read or watch or do, as it takes a few hours..

Hope this helps you. :)
Posted 6/21/2013 11:02 AM (GMT 0)
OK, that's good to know. I'll definitely have to buy some on my way home and I doubt I will have a reaction since I'm always good in that aspect. (not allergic to anything!) But you never know..

I've had IV lines as well as direct PICC lines. At the moment, I'm not in a flare because I'm on Prednisone but I'm hoping with Remi, I can finally get off of Asacol. :)

Thank you! I'm definitely bringing a book, my laptop and some snacks. ;)
Posted 6/21/2013 11:40 AM (GMT 0)
For me, they gave me Benedryl prior to the infusion. The infusion itself was nothing. I actually enjoyed having to go because I got to sit for a few hours, read a book, watch movies, etc... I have 2 little kids at home so it was a nice break. :). Afterwards, I usually felt tired for just that day.
Posted 6/21/2013 11:48 AM (GMT 0)
I got nothing at my old infusion center. I get Tylenol and Benadryl at my new infusion center.
Posted 6/21/2013 3:02 PM (GMT 0)
I'm still getting infused and the only problem I have is them inserting the IV since my veins are small. But besides that, I'm OK and they did not give me neither of those. I had to take a Tylenol at home 2 hours prior.

Although, I must say, I'm glad I found an Optimum hotspot otherwise I would have been bored out of my mind!
Posted 6/21/2013 3:15 PM (GMT 0)
If you start getting shoulder or chest pain, have them slow down your infusion rate but it sounds like things are going good. Good luck!
Posted 6/21/2013 3:20 PM (GMT 0)
Chest tightness and shortness of breath were both big for me whenever I got my infusions. They stopped the infusion, gave me some benedryl, then continued at a slower rate, good luck:)
Posted 6/21/2013 3:24 PM (GMT 0)
They usually have a hard time sticking me because I've been dehydrated. But as I get better, it gets easier!

I'm SO jealous that people are able to watch stuff. The infusion center where I go has TVs, but I always have my computer and would rather watch Netflix or Youtube or something. But of COURSE, the hospital wifi blocks streaming content. I figured out how to use my phone as a WiFi hotspot, so maybe I'll use that next time.
Posted 6/21/2013 11:26 PM (GMT 0)
How did things go katarzyna?

How you feeling?

my place the wifi was down ... (i've only been once so far the other doses were in hospital) Hoping they get it running for next time....
Posted 6/22/2013 12:13 PM (GMT 0)
Besides the Benadryl IV that the infusion center gave me with the Remicade they would also send me home with 2 Benadryl pills to take when I got home so I wouldn't develop a reaction.

Some doctors will prescribe Benadryl, Tylenol, and a steroid IV with the Remicade IV. They wanted to start using Steroid IVs for me after about about 4yrs of only using Benadryl and Tylenol because I started to develop reactions to the Remicade....I just decided to switch to Humira instead, I figured the Remicade had run its course and it was time to switch.
Posted 6/22/2013 3:16 PM (GMT 0)
So were you told if the Remicade works you can get off of Asacol? I was told I would stay on both. I'm curious what others on Remicade are doing.
Posted 6/22/2013 7:46 PM (GMT 0)
i was told i could drop mine (meslamines) too Scum, 3 gi`s agreed...said if it was working i wouldn`t have ended up in hospital....

Not sure I agree 100% but hey, one less drug in my body all the better....

figure too if I`m off it.. and then i see some symptoms, I might try reintroducing to see if it gives my body a nudge in the right direction...
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