What do you do while getting your Remicade infusion?

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Peaches

Joined
Aug 19, 2009
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I know most of us have SOMETHING we like to do while we are getting our infusions, but thought this might be a good place for the new people to come to to get ideas of what they can do to spend the time.

This is an extreme example from me born out of the need to get something done and being able to do it in that very space - so why not? This is a heavy gauge sterling byzantine bracelet that I made yesterday for my sister for Christmas (hopefully she doesn't lurk on the forum anymore!). I turned 125 of those little links in the middle (called jump rings) into this in about 2 hours:

ByzantineBracelet.jpg
 
Well, you are far more constructive than I am...I guess your IV isn't placed in your hand???I usually read or watch the boob tube. I brought my lap top, but they don't have wireless....Very beautiful necklace, handmade gifts are the best!
 
I did have it in my left hand which is my dominant hand, so I had to hold it with my left hand while "working" mostly with my right. I always have to watch the IV for the occlusion thing - my nurse just LOVES when I show up with mess like that to do......tee hee!
 
Yeah, I usually try to sleep while my nurse tells me all her woes :(
 
When I used to get Remicade I used to bring my Ipod and listen to music, play with all the gizmos attached the thing-a-ma-jig, and sometimes I would read.
 
The short time I had the infusions, there were only 3 being done at a time and they played a dvd, which was great as the room was very small, no room for tables.
 
A TV in the room would be so weird I think with three people getting infused. I've never had that where I have always gone. I spoke to my new Remi nurse at the place where I have to transfer now that my insurance has changed. She was talking up how much better their chairs were than where I go and that they are working on getting a TV. It was like she was trying to "sell" me or something on the idea of switching. I guess when they get $4,500 a pop - or more like $6,500 now that my dosage has increased - they feel the need to entice you!
 
podcast.com has some great ones from the BBC and they have a link to XM radio's podcast of Bob Edwards weekend which is great too.
 
Peaches said:
A TV in the room would be so weird I think with three people getting infused. I've never had that where I have always gone. I spoke to my new Remi nurse at the place where I have to transfer now that my insurance has changed. She was talking up how much better their chairs were than where I go and that they are working on getting a TV. It was like she was trying to "sell" me or something on the idea of switching. I guess when they get $4,500 a pop - or more like $6,500 now that my dosage has increased - they feel the need to entice you!
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See Shantel, maybe this IS a positive change??? Comfy chairs and a tv,maybe you will get a hunky new doctor too;)
 
Mine always had a tv attached to the chair so I'd usually be stuck watching Dr. Phil or Oprah.

I would also chat with my mom or try to read a book. Soemtimes I was too sleepy to do anything.
 
I usually brought a book. However I was too busy suspiciously watching my I.V. line for bubbles to read. I think I was still going to the children's hospital when I first started getting infusions, being in a room with a bunch of kids sick with cancer was really sad. I remember the first time I went a kid looked at me and said to his mum: "he must be new here, he still has all his hair" :(
 
Wiles said:
I usually brought a book. However I was too busy suspiciously watching my I.V. line for bubbles to read. I think I was still going to the children's hospital when I first started getting infusions, being in a room with a bunch of kids sick with cancer was really sad. I remember the first time I went a kid looked at me and said to his mum: "he must be new here, he still has all his hair" :(
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Yah, it makes Crohns not seem so bad when you see what other people are going through. This summer I got iron infusions at the medical day unit and most people were in there for chemo. It was sad, but I felt thankful I am as healthy as I am.
 
Wiles said:
I usually brought a book. However I was too busy suspiciously watching my I.V. line for bubbles to read. I think I was still going to the children's hospital when I first started getting infusions, being in a room with a bunch of kids sick with cancer was really sad. I remember the first time I went a kid looked at me and said to his mum: "he must be new here, he still has all his hair" :(
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That is so sad Wiles!! We usually only ever have Remi and iron infusions in my clinic thankfully - that would make me depressed for a week!

I hear you on the bubbles - I think we had that discussion on here a few months ago, so now I just try not to pay attention to them - I haven't died yet!
 
hmm well two of my three infusions I was already admited in the hospital so I had tv, books, laptop, sleep but my next visit it will be my laptop, tv and me.
 
imisspopcorn said:
How are you feeling Skinny??
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Still feeling really good, my next remi infusion they are going to check my b12 levels to see if they need to do anything. But other then that sitting around doing nothing and going back to work Dec 28.:) Oh and I got engaged :emot-dance:
 
It went well, but freezing! I posted an update in my intro thread. I have never been in Vegas when it has been that cold.
 
Do they give you shots of benadryl JJ? I would have never been able to do that bracelet on a benadryl shot - it would have looked like CRAP LOL!!! That stuff just makes me totally high. I'm glad they give me Zyrtec now.
 
Most of the time they give me it through the IV but last time they gave me the pills. I would rather it through the IV though. I do not like big chaulky tasting pills! I felt like I was going to gag with them, it was disgusting! Both ways still knocks me out. I am probably going to have my Remicade next week but am a little concerned because I have been having very bad bad aches and pains since the increase and still having bad days. I feel like its helping to an extent the Remicade but not enough for me to function well each day :(
I like the bracelet Peaches! Very nice!
 
I will take a nap, listen to the ipod and lately I bring the laptop and work using an aircard. That really passes the time and I dont have to worrk about using vacation time! :lol:
 
Jennjenn said:
Most of the time they give me it through the IV but last time they gave me the pills. I would rather it through the IV though. I do not like big chaulky tasting pills! I felt like I was going to gag with them, it was disgusting! Both ways still knocks me out. I am probably going to have my Remicade next week but am a little concerned because I have been having very bad bad aches and pains since the increase and still having bad days. I feel like its helping to an extent the Remicade but not enough for me to function well each day :(
I like the bracelet Peaches! Very nice!
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I'm sorry you aren't having a great response - and pain to go with it - bummer! I'm starting to wonder if I'm losing response as well. Have had weird things going on since they increase my dose 2 weeks ago AND I'm on the pred. Grrrrr..

Thanks re: bracelet - it was fun to make and the time FLEW by - infusion was over before I knew it.
 
Good God. People DO things during their infusions?? :lol:

The Benadryl hits me like a rock (that combined with my early
morning appointments) and I sleep through 90% of it.
 
That used to be me Mini - when they would give me the Benadryl push - out in two minutes! But since I've been getting a Zyrtec pill...well....I can't sleep with all the blood pressure taking and temp taking, so I look for things to do.
 
I surf the web while I am awake & when the bendryl takes hold I usually nap to some of my tunes on my ipod.

I used to get remicade at a different office with a bunch of hot nurses. That was fun.
 
TN - you bad boy ;)

Mini - I believe they gave me the benadryl pushes for around the first year of Remi. It was always bad because I drove myself and it was like waking up from a drunken stooper trying to get me ready to leave afterward. Then they switched me to Zyrtec and solumedrol (eh, I think they always did the solumedrol as well) and while I don't get that sleepy while I'm getting the Remi - by the time I do the 45 minute drive home - I am ZONKED and ready for a big old fat nap. I think it is the Zyrtec that does it to me, but I've never been off of it to know for sure.
 
yeah I hear that. I drive like a crazy person home...in the MINI world
we call it: like a 'MINIac', and then pass out at home. I basically
tell people not to bother me at all that day because I know I will be
incapacitated. I plan on getting nothing done those days.
 
Once they hang the bag, usually about 2.5 hours - but they have to get the IV in and the meds ordered up, so add at least another hour to that. I'm usually there about 3.5 to 4 hours.

Hey - you should join the Remicade club thread BC.......it would be a good read for you probably.
 
MINI Cooper said:
yeah I hear that. I drive like a crazy person home...in the MINI world
we call it: like a 'MINIac', and then pass out at home. I basically
tell people not to bother me at all that day because I know I will be
incapacitated. I plan on getting nothing done those days.
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lol....I am the same way, except I have to stop at this do-nut shop by the hospital....mmmmmmm....honey dipped.....:drool: & then the 2nd hand store I like to shop at is right next door, so I go get my do-nuts & then stumble around the 2nd hand store like a drunk on payday, then after I have purchased god knows what, I make my way home & try not kill myself or anyone else....Then I pass out on the couch for like 12 hours with do-nut crusties in the corner of my mouth & the musty smell of the 2nd hand store hanging on my newly purchased coat/tshirt/hoodie/wahtever....
 
BAYOUCROHNS- It actually takes a LOT longer the first
time you have an infusion. They have to run the drip very
slow at first to make sure you are not allergic to it, which some
people are. I was there for 5 or 6 hours. So plan on half your
day being at the hospital.

TN- DONUTS???? LOL
 
Seeing as I prefer the needle to go in my hand, I just watch films. Most the people around my get treatment for psirosis and imo are 75+ they snore.. I mean sleep and I just gaze around like a lemon lol
 
~TN~ said:
lol....I am the same way, except I have to stop at this do-nut shop by the hospital....mmmmmmm....honey dipped.....:drool: & then the 2nd hand store I like to shop at is right next door, so I go get my do-nuts & then stumble around the 2nd hand store like a drunk on payday, then after I have purchased god knows what, I make my way home & try not kill myself or anyone else....Then I pass out on the couch for like 12 hours with do-nut crusties in the corner of my mouth & the musty smell of the 2nd hand store hanging on my newly purchased coat/tshirt/hoodie/wahtever....
Click to expand...
now THAT is funny!
 
I chat with the nurses :D

I often wonder why they don't pre-medicate us here. I'm not sure if it's a US/UK thing, or if they just like to do things different at this trust.
 
In my Remicade room there is a TV and a DVD player. I'm the youngest patient getting Remicade in that office so i always bring Grey's Anatomy and watch that but i usually fall asleep... But my nurse is ok and she like Grey's as well so it works out.

I have noticed though that the older people getting Remicade are CRANKY. so watch out!

Does anyone else feel sluggish and exhausted after their infusions?
Maybe like your getting the flu?
 
I usually feel like I haven't slept in a week - so I conk out the rest of the day - dragging myself out of bed to eat dinner with the family (hubby is in charge of kid pick up and dinner those days) and then going back to bed. Every every so often I will take a 2 or 3 hour nap and then feel fine the rest of the night, but most of the time I feel drugged. The next day I'm usually fine!
 
I always feel fatgued when it is getting near my next dose. I call Remicade my high octane go-go juice....Everyone is different..
 

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