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First Remicade treatment what to expect?

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Posted 3/9/2012 12:53 AM (GMT 0)
I am starting remicade on monday and would just like peoples personal stories of their first infusion (day off and days after)
Posted 3/9/2012 1:09 AM (GMT 0)
The first infusion takes the longest, they administer it slowly to watch for any reaction. Bring a book or something to occupy yourself. I find the infusions pretty relaxing and painless. I normally feel tired for a day or two after. It may take a few infusions for you to notice an effect so don't be discouraged if it does not work right away.
Posted 3/9/2012 1:16 AM (GMT 0)
You may be really tired that day and possibly even the next day. I would go home and just crash. They will give you Tylenol and Benadryl before they start the infusion and once they start they will monitor you very closely..checking blood pressure every 15 minutes or so. The nurse stayed in the room with me the entire time for the first infusion. It's really boring so bring something to do.
Posted 3/9/2012 2:50 AM (GMT 0)
I just had my first infusion on Monday, the nurses seem to be very good at handling the first time and should walk you through it nicely. It was very calm for me, I brought a book and gameboy to occupy my time, although they also had TV there to watch. I wasn't tired afterwards, I felt just about the same as when I went. I have slowly noticed improvements over the last couple days, looking forward to my next infusion on the 19th of March.

Don't be worried or anything if that's why you want to hear about other peoples experiences. You should be in good hands and hopefully everything will go well, just keep thinking it will and hope for the best for yourself as well.

Good luck
Posted 3/9/2012 3:18 AM (GMT 0)
I get oral Benedryl and IV Solumedrol (steroid) a half an hour before my infusions. I agree, it's very relaxing. I am usually there for about 3-4 hours, depending on how fast they get things together. So I bring a book, watch tv, go on the internet. I have mine done at my local hospital and I just had my 5th infusion. 4 out of 5 times I had a room mate which helped pass the time.
Posted 3/9/2012 3:19 AM (GMT 0)
Oh, forgot to mention; because of the Benedryl (which I have to take for 24 hours after because I had a reaction after my 3rd) so I am normally tired for a few days.
Posted 3/9/2012 4:37 AM (GMT 0)
Red_34 when you say reaction what kind of symptoms did you have?
Posted 3/9/2012 1:19 PM (GMT 0)
I wasn't premedicated before my infusion and my hands and right elbow swelled up, I had severe muscle cramps, my neck also locked up. It was extremely painful, my hands were claws. So I had to end up going to the ER for pain relief. They gave me a shot of Toradol and a short course of prednisone. So they started premedicating me and things have gone smoothly since then. However, I had some chest pain with my last infusion which I have to bring up to my GI when I see him next week.
Posted 3/9/2012 3:36 PM (GMT 0)
I had my first infusion yesterday. I was pretty keyed-up but looking back it was no big deal. Before she got started, she had me read about Remicade and the possible side effects and what to do if I thought I was having any of them.

I took an oral Benedryl and got to choose where the IV went in (left elbow), then she mixed up the infusion and hung the bag. She explained that it starts pumping slowly (50 whatever per whatever) and as the session went on it got up to 250 whatever per whatever. It took about 2 hours from the time she started until it was completed.

The chair was very comfortable, like a recliner. She offered me water, a granola bar, blankets and a neck pillow. I did some needlework and listened to a book on tape.

When I had to go to the bathroom, I just took the IV stand with me. I did get some funny looks in the waiting room.

Afterwards, I was extremely tired. I took the whole day off and just went home and vegged out on the couch. I kind of milked it and made my husband make dinner, but ...

Today I'm fine. No side effects from the medicine, and my energy level is the same as before.
Posted 3/14/2012 11:22 PM (GMT 0)
So i had my first remicade infusion yesterday in a hospital and everything went great. I had no reactions and just watched tv for a few hours. I havent noticed any difference in my symptoms but it has only been 24 hours. Hopefully I will see some results in the next week. How long did it take for people to see results?
Posted 3/15/2012 1:22 AM (GMT 0)
despi, glad ur infusion went well!! i noticed an improvement in my symptoms after the first few days of the infusion. i also started sleeping ALL the time. however, after my 5th infusion, i started flaring again. it was like i didn't get a 5th infusion at all. i'm not sure if i'm going to get another infusion. i have it scheduled for march 28 but it seems like a waste, especially cuz it makes me so sore and tired.
Posted 3/15/2012 2:35 AM (GMT 0)
After my first infusion, I had a lot of pings and pains in my gut; like I could of sort of feel things working but not if that makes sense? Things started sort of improving but I was still having issues. The first dose is just the beginning of the loading dose so don't expect too much from it. I actually didn't get relief until my 3rd dose (even tho I had the reaction). I just had my 5th a few weeks ago but after my 3rd, I hit a pretty nice remission. I hope this will be the case for you as well! :)
Posted 3/15/2012 2:41 AM (GMT 0)
thanks for the replies! bananagirl I am exhausted as well. All I've been doing is sleeping or wanting to be asleep!
Posted 3/15/2012 2:49 AM (GMT 0)
I don't know if the fatigue or sleepiness improves the longer you are on it or not. I'm still waiting for the fatigue to go. I am usually fine now in the mid mornings to early afternoons but then the fatigue and sleepiness hits me full force by late afternoon/evening.

Did they give you Benedryl with the infusion?
Posted 3/15/2012 3:32 PM (GMT 0)
Yes they gave me tylenol and benadryl and the whole remicade infusion process took about three hours
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