Had my first Remicade infusion today

Appointment was at 10AM at hospital. I reported to the Endoscopy/Infusion check-in and waited in the room with about a dozen other folks who were in for a different kind of fun this morning. I was nibbling on a few pieces of chocolate to get my blood sugar up as my light breakfast had worn off. I asked the lady next to me if she would like a piece and got a not-very-nice response. She tersely reminded me that she couldn’t have anything to eat that morning because of her colonoscopy. I felt a little bad. Sorry, lady.

They took me back to what was basically a scope-prep room that they also use as an infusion room. I’ve been to this very same facility for a number of colonoscopies myself. It had a bed, a chair, and a tv, and I had it all to myself. The RN asked me all the usual questions and hooked me up to an IV with a saline drip at about 10:30. My vein rolled a little so there was a little discomfort but there usually is with an IV so no big deal. The nurse explained (afterwards) that they used a big needle/catheter for the IV on instructions from the remicade training people. She said the molecules were big and “Y” shaped and that smaller catheters tended to knock off the little arms off the Y too much, and with the expense of this medication they didn’t want to waste a drop. I found that interesting.

The RN said she would get all the info to the pharmacy and they would mix up my goodies and bring it down. She said they were very careful in transporting and caring for the medication and weren’t allowed to shake it up at all…I assume because of the delicate nature and cost as previously explained. I bring this up because at my last GI appointment the physician’s assistant mentioned the possibility of having a home health nurse maybe give the infusion at home. I asked the RN and she said it wouldn’t be likely. With that, and the idea of this multi-thousand dollar bag of stuff rolling around in the back of someone’s car, I think I’ll probably stick to going to the hospital.

I asked if they gave folks Benadryl as I had read on this forum that sometimes that is the case. She said the doctor had listed it on there if I needed it and asked me if I wanted that and/or some Tylenol. I said let’s try without. The RN said that if there was going to be an allergic reaction to the remicade it would usually happen in the first 10-15 minutes. They hooked up the remicade at about 11:30 and the nurse stayed in the room for quite some time frequently checking my temperature and blood pressure and asking me how I was feeling. She chatted with me and my wife quite a bit (kids, etc). Every so often she would increase the volume rate of the infusion, check temperature and blood pressure, and ask how I was doing.

At one point maybe an hour in I said I was fine but did feel an overall sense of warmth. She said that is typical and read off that my temperature had been increasing since the infusion started. It peaked at 99.8, I think. She said this is typical with nearly any infusion and explained that usually the blood pressure drops (I think she said drops, anyway. Mine stayed steady so it wasn’t an issue). After about an hour and 15 minutes I didn’t notice the temperature thing anymore and she eventually got the pump volume up to max and left the room for a little while. I relaxed and meditated a bit. There were no issues and she came back in to say she had to leave and another nurse would be taking over.

After about two and a half hours the bag was nearly empty and the alarm sounded. The new nurse let the last little bit drip in and unhooked the remicade. She said they like to have folks wait about a half hour and let a little more saline run through to clear the lines before they them go. She also said that most folks don’t complain of any ill effects post-infusion but some do say that they are a bit worn down the next day so maybe be on the lookout for that. After reading the same thing here I just decided to take tomorrow off work as well. So after about 20 minutes she unhooked me, scheduled my next infusion for the day after Memorial Day, gave me my walking papers, and out the door my wife and I went for a late lunch. No ill effects at all. This was about 2:30-2:45PM. So it was pretty much a full day of dealing with it.

I had my first remicade IV on Thursday 5/7 and was similar to your visit as well... I wasn't as pampered (lucky u) but they did monitor me for any ill effects during my 3 hour tour.... All went well and I hope we both find that this will get us to remission... Wish u well...
One side note they gave me a number to call before my next IV session... You call right before you leave in the morning and that gets the pharmacy notice and will have my remicade ready for me so it will save me 30 - 40 minutes... It sounds good so I'll give it a try. You might see if that is something they offer as well....

This is a new chapter for us and I sure hope it's s good one.

I get mine done at the hospital and when I had my first dose, I was there for about 6 hours and had a nurse stay with me the whole time. Now I'm usually there for about 3 hours because I premedicate with Benedryl and Solumedrol - they wait about an hour for them to work then give me my Remicade. I usually get a baseline read before they start anything and then after hook up, 3 times after that every 15 minutes. My temp spikes a bit as well and my bp fluctuates. But it's never been too bad.

Good luck on the rest of your infusions and I hope it works well for you :)

When I was on remicade, it took me almost the whole day I felt like. They were have me in there at 8 and i wouldn't get home until pretty late. I would bring my computer and work. With entyvio, it's only 30 minutes. I am there for an hour total. I chose simponi before remicade but neither worked for me.

LOL, mcfarl, I don't work so I'm a stay at home housewife and still the last thing I would want to do it spend a few hours getting an infusion done....I'd rather do the 10 second shot, it's not that bad, you just let the pen warm up a bit and inject for 10 seconds...some people find using ice on the injection site before they inject very helpful too but I've never bothered cuz it doesn't hurt bad enough to warrant icing it, but everyone is different and I know some people have major needle phobias which stops them from being able to inject themselves...I'm just glad I can do it with no problems.

I had the choice too between Remicade and Humira. I knew I couldn't give myself a shot but I'm glad I chose Remicade. Because not only can I relax and "disappear" for 3 or so hours but I get the whole nursing staff to wait on me :) Yeah, it can be a hassle at times but as a stay at home mom myself it feels nice to have someone wait on me for a change! Lol

Ha, I'm the same as you mcfarl73. I can't watch the IV going in but I'm fine after that. Just had my second one the other day. No miraculous remission yet but fingers are crossed.

I felt like humira was really scary to do myself until I got the practice pen, now every time I just use the practice pen a few times and it calms me, then I do the real shot. Mine do sting a lot. But I think with remi same thing like as long as I didn't watch the needle go in i would be ok

Chrissysoul said...
I felt like humira was really scary to do myself until I got the practice pen, now every time I just use the practice pen a few times and it calms me, then I do the real shot. Mine do sting a lot. But I think with remi same thing like as long as I didn't watch the needle go in i would be ok

I find if I let the pen sit out of the fridge for a minimum 20 minutes to warm up before injecting it helps....some people also find icing the area then using the alcohol wipe and letting it dry (imperative) then doing the shot makes a world of difference....sometimes I've squeezed/pinch the area too much while doing the shot (especially in the beginning when I first started doing them) and that would end up causing a bit of extra pain and bruising so then I got into the habit of pinching the area a little just to warm the area up that I'm going to inject in and then following usual procedure (wiping with alcohol rubs) and doing my shots and often I don't feel any pain when doing it this way.

You were also told to avoid injecting into skin that has any blemishes, birthmarks and scars right?