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    Any advice for my first Remicade infusion?
    OyWithThePoodlesAlready posted:
    I have my first remicade infusion next Wednesday - anyone have any advice?

    I have an 11am time slot so I figure I'll eat breakfast and bring some lunch... My husband is driving me, he'll probably go on to work while I'm there but is only 15 min away

    In addition to lunch I figure I'll bring:
    • my phone with my kindle books on it,
    • my netbook with some tv,
    • gluten free snacks.
    anything else I should pack?
    JavaMamma27 responded:
    I hope it works for you!
    mindyj1971 responded:
    Sounds like you have everything planned out! Take a sweater, the infusions always made me a little chilly; they always had blankets in the warmer and it felt so good, but was nice to have my own comfy, over-sized sweater that I could pull around me. I always tried to sleep, but they take your vitals every 30 minutes, so that was impossible:(

    Since you are just starting out, make sure you don't have much planned for the day or two after your infusion. I would schedule my infusions on a Friday so that my hubby could care for the kids on the weekend while I recovered. I was always sooooo tired and slept a lot afterward. I also had a slight headache for the first 24 hours or so.

    I truly hope that this is the medication that makes a difference for you. I was on it for over a year and it did close up a fistula, but I never really did feel great like some people do when they are on it.

    I'm sure you know by now that your immune system will be even more compromised once you start this med. Have lots of Clorox wipes around the house and wash your hands frequently. A simple sinus infection could have you down for a good week instead of just a couple of days:(

    Let us know how you do....will be thinking of you and praying for you:)
    OyWithThePoodlesAlready replied to JavaMamma27's response:
    thanks! wouldn't it be a dream come true if everything was made fine with it? I'm trying to keep guarded expectations - but it would be nice
    OyWithThePoodlesAlready replied to mindyj1971's response:
    thanks Mindy. I have scheduled off for the rest of the week - I asked about doing it Friday but the dr office only does Tuesday and Wednesday.

    I'm picturing the remicade goes in your arm like an iv - is that right? I'd thought about even trying to find a snuggie to take (not exactly in season ) but then I thought - if it is like an iv - once I'm hooked up I won't be able to take on or off a sleeve... also, don't you need access to your arm? maybe its not like I'm imagining at all

    hope you are enjoying Easter
    jaimem92 replied to OyWithThePoodlesAlready's response:
    I always tend to sleep through my infusion. They give you benadryl before- at least mine does. I bring my kindle too and then just kinda dose as I please. The IV should go in your hand- they should try to save your arm veins for when they need them years down the road. I didn't have much of a problem with being really tired when I first started Remicade, now I try to schedule them on Friday. But last time I had it on Thursday- worked on friday and was on call the rest of the weekend.. I could tell I was tired and rather pooped, but it was manageable. Be sure to wash your hands a lot if you might have touched something with germs on it. lol. I notice I get sick really easy the week after my infusion too.. ANyway- good luck with it! Hope it works!
    hannahleigh89 replied to OyWithThePoodlesAlready's response:
    It is exactly like an IV. They hook you up to an IV like normal, and instead of just regular saline fluid, you will also have a smaller bag that has the medication in it, or it will be mixed in with the saline. Usually they keep those rooms very cold and you will not be able to pull a sleeve off or on very easily. The saline is also kept cold usually. Once they start the IV though, unless you have discomfort, they don't usually have to mess with the site again until after it's over with.

    I'm glad you're going into this with realistic expectations. It's so hard to remain guarded and hopeful at the same time, but it's really the best attitude to have when starting something like Remicade. I wish you the best.
    OyWithThePoodlesAlready replied to hannahleigh89's response:
    huh - good to know thanks!
    So Hannah, you got your IV at your elbow (or what ever you call the normal vein they draw from) or did they use a hand vein too?
    I did ask a nurse that had administered it for 2 years if she'd ever seen trouble with veins and she hadn't

    Now I'm curious - if its the hand I can wear a sweatshirt but if they need access to my elbow that won't work... oh well, I'll figure something out - thanks all
    miserable_sob replied to OyWithThePoodlesAlready's response:
    My veins suck. I get sick of them trying to find a good one to stick the IV in. One time they made so many attempts, I just told them to "quit it" and they did.
    hannahleigh89 replied to OyWithThePoodlesAlready's response:
    I have really bad veins so they used whatever they could get. I've got little scars all over both my arms from IVs, lol. It was usually in my hand or my forearm somewhere, not usually up at the bend of my elbow.
    miserable_sob replied to hannahleigh89's response:
    Sounds like you understand Hannah how frustrating it is to be a human pin cushion. Although when I was very ill last year because my J-Pouch left me dehydrated again, they couldn't stick that IV in me fast enough. I know from past experience how IV feedings cure dehydration much faster than Gatorade or water. In fact I've found drinking liquids to be useless when dehydration sets in.
    jaimem92 replied to miserable_sob's response:
    Usually when you have a chronic disease that requires IVs- they should start in your hands, because its at the lowest point of the vein. If you overuse the vein in your arm, it can kill the entire vein. Just like, if lab draws from your upper arm, they can't use that vein lower down for your infusion.
    OyWithThePoodlesAlready replied to jaimem92's response:
    wow, so much I don't know, thanks
    mattdamonishot responded:
    I have my third infusion on Friday the 29th. It has been a piece of cake for me. I have had ZERO side effects. No headache even. THe nurse did have a problem gettign the IV in my vein so after the last one I had a HUGE bruise that lasted over a week but that was about it.
    I do get cold but I usually ask for a blanket right away and then I am good. I watch tv and snooze some but they check my vitals every 15 mins making sleep kind of hard.

    I really hope it works for both of us!!!!!!
    OyWithThePoodlesAlready replied to mattdamonishot's response:
    thanks! I'm just about to head out- fingers crossed

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