• Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.

First Remicade July 1st 2008

What do I need to know? Anything special?

Should my hubby come along to help me get back home afterwards? (Driving?)

:cat:

My hubby said call the doctor and ask but I figured you guys were just as knowledgeable. :tongue:
 

soupdragon69

ele mental leprechaun
Hi Kittee,

Take something to read and some music if you like to pass the time.

It would be good if your hubby could go with you as I generally feel drained after my iv. The first one I was a bit light headed too when walking back to the car and had no one to go with me. I also found that I sometimes I got a bit cold so ask the staff for a blanket if you need it.

Am sure the others will come with things too.

All the best for it!
 
Woohoo!!!

Just bring a book. It's just an IV and takes about three hours all together. You will definitely be able to drive home by yourself afterwards but it is nice to have some moral support.
 
I was really drowzy after mine, so I'd bring the hubby. You can bring a book or just sleep, but they take your BP every 15 minutes, so it's not much of a good sleep.

I was cold during mine too, so I would ask for a blanket or at least wear pants.

Don't drink a ton before you go, because carting the whole IV cart to the bathroom is a bit of a pain, and they watch you while you go.
 
Man during mine I got really pumped up. I never felt cold or got tired. It was like they were pumping adrenaline through my veins or something.lol
 

soupdragon69

ele mental leprechaun
Just shows how different the meds can affect us like our crohns can too eh? Its interesting seeing folks thoughts.

You are right about the loo Katiesue and carting it with you but my crew didnt watch me thankfully! Good to know I wasnt the only one cold and tired too so thanks for that.

I usually treat myself to something nice that day either food or drink wise and take it with me or have it at home.
 
Definitely bring a book or a magazine. Wear socks! I got cold too. If you want to wear a sweater, make sure you can roll the sleeves past your elbow and remember that is you are wearing it when the iv goes in, you can't take it off until the infusion is over. I tend to get tired after my infusion, so I'm with the people who suggest bringing your husband along. Even if it doesn't make you tired, better safe than sorry for the fist infusion!

Dragging the iv pole around can be a pain, but if you drink something beforehand, your veins will be easier to find.

If you're like me and hate the feeling of a needle digging around in your arm, make sure you ask for something to numb the iv site.
 
I get hot easily, so I never really get cold the way others do, but I could feel a chill in my arm, the Remicade is kept refrigerated, so it makes sense if your veins are coursing with a 40 degree fluid for a couple hours. I don't get tired during mine either, and have had to rush to the bathroom during most infusions at one point or another, and nobody kept an eye on me in there.

Congrats Kittee, hopefully you respond well and can put the agony behind you.
 
Oh yeah I get the chill in my arm but I'm like you Benson and am always hot so the chill is welcome especially in the deep south.:)
 
Okie =)

Ugh its refrigerated? I have horrible memories of refrigerated meds going into my veins and puking my guts up from childhood. I'm definitely not looking forward to it now lol.
 
*hugs* thanks Pen. I actually made myself nauseous with worry dreading that same feeling from childhood. It was horrible. I was having a CT scan or something and they put that chilled dye in my veins and I sprayed the entire front of the machine with orange flavored vomit. ><
 
I hate to extend this out for you Kittee, but all Remicade I've seen, and heard about, and read about is kept in a refrigerator, for the same reasons Humira is. It is mailed in insulated packages for temperature and labeled to keep refrigerated (my second accidentally shipped to my house). I know it is kept in one too because my GI office has a full size fridge in the room I get infused in, and they've got a good $100,000+ grand worth of it stocked up from all the patients. I don't know if Pen had a more fresh source for the Remicade and it didn't require refrigeration because of it or what, but I'm telling you I've never heard otherwise. Maybe it's a Canadian thing? I'm quite confused here.

Can other people here clarify? Saidinstouch or Colt? Anyone?
 

soupdragon69

ele mental leprechaun
I agree totally with you Benson about the refrigeration of Remicade. I watched the staff take my vials out of the fridge every single time. Thing is though it IS made up with room temp fluids and the bag of fluid it is put into is room temp too.

There are drugs that to maintain their compositition need to stay in the fridge until used - insulin being a more common one but all are made up with room temp fluids. We have 3 seperate fridges at work depending on the drug type and also a fridge for TPN which is the feed given by veins only.

The only cold sensation is the one going up your arm (which not everyone gets!) and its because the room temp fluids tend to be cooler than your own body temp at the time. That is negligible.

You really shouldnt have any problems with this Kittee but if you are worried talk to the staff when you arrive, they will understand and support you.
 
Yes, I was one of those who felt a slight bit of a chill in my forearm of the involved infusion site, but it stopped at the elbow, and was only noticable for the first bit. After that it either went away or I couldn't sense it. It's really not a big deal.
 
Thanks guys. :) I'm trying to be more calm today. My hubby has scheduled the day off to go with me as well so thats also nice. Is he allowed to sit with me while they do the infusion?

Anyone know?
 
Where I used to get infusions my mom always sat with me. I'm going to a new place on Friday for treatments so I don't know. I think he should be able to sit with you but it may depend on how many people are getting infusions and how many chairs are being taken up.
 
Yep... itll be boring, but most infusion rooms have tv's in them. And yeah, they do start with saline and then they go to a remicade drip mixed with saline. They slowly increase the remicade drip over time and then mine always ended with another 30 minutes of saline drip.
 
When I get Remicade, they make me take some Benadryl and Tylenol to prevent an allergic reaction. Then they put the IV in and draw some blood and flush the line with a little syringe of saline. They drip in some steroid, and THEN actually get on with the Remicade. And after all the Remicade is in, they flush the line with more saline.For me, the little bit of saline at the beginning was always colder than the Remicade (which is at room temp) and I could taste/smell it. When they increase the rate of the infusion, you can kind of feel it pumping into your veins. It's a little gross, but definitely bearable. And if you ask for a warm blanket or a hot pack, you won't feel the colder liquid entering your arm.

And there's usually a chair or two in the little infusion cubicle so someone can sit with you! If there are no chairs, I'm sure you can always ask and they'll find you one.

Good luck! Let us know how it goes.
 
Well I made it through!

No ill effects that I can tell! I was a little scared but everything turned out ok and I got to catch up on a book and watch some daytime tv lol. They didn't have room for my hubby in the room though. Poor guy had to wait outside in the lobby!
 
Pen, I don't think they leave it out to warm up as that would defeat the purpose of refrigeration in the first place, but I believe its mixture into the saline warms it up. I see them take it right out of the fridge just a few feet away and I watch the nurse prepare the saline bag each time.

Congrats Kittee, how about a big collective "told you so!" from the forum. :D
 
BWS1982 said:
Congrats Kittee, how about a big collective "told you so!" from the forum. :D

Told you so!:)

Pen I'm dying for some chees right now, not that you mention it.:)

I'm glad Kittee that it went well.
 
We told you so!

I feel bad for your husband, though! That's a long time to wait in the lobby. I'm glad everything went okay! Hopefully next time it will be even easier and less nerve-wracking.
 
Last edited:
So today has been a rollercoaster ride!

My work is going through some crazy changes and a co-worker got beaten and I helped her out today. Anyways....that being said.

I'm super tired and a little nauseous.

Is this normal for the day after Remicade?

I passed out for a nap a couple hours ago and didnt wake up until 2pm lol.
 
Top