The day or two after infusion, what's it like?

[ThanksP]

I start Remicade this Friday. I have a very busy schedule helping to care for my nephew who has Lymphoma. On Sunday morning, I have to drive back down to FL to stay with him the week. Am I going to be feeling like I got hit by a truck on Sunday or should I be feeling okay by then? When I took Cimzia, the day after my shots, I felt horrible and was pretty much confined to my bed all day. Are the after effects of Remicade similar? Or maybe I'll be spared and not feel any different. THat would be nice.

So how does Remicade effect you after infusion? Please tell me I'll be fine :wink:

 

[Crohn's 35]

My first infusion was fine. Just took a bottle of water to drink. Strange thing is I craved cheese lol. Kidding, I had no problems til the 3rd infusion...not going there.

 

[muppet]

3rd infusion is the bellwether, I've been told. That's where it went south for us, too.

 

[ThanksP]

Oh great, the third one will be when my husband is home on R&R for three weeks this year. Lovely. Well, on the positive side, if it were to go south, at least my best friend will be by my side. Now that I think of it, that's a relief.

 

[dragonfly]

sorry to invite myself in this conversation but please share whats so bad about the 3rd infusion???? i go for my 2nd tomorrow and so far so good. what kind of experiences have you all had with the 3rd dose???

 

[muppet]

For some reason, apparently (I haven't seen the data that supports this but have been told by doctors and infusion nurses) the third dose is statistically most likely to be the one where patients who are going to have an adverse reaction, have one.

In my daughter's case it was not an acute reaction during the infusion, it was weeks later and came on gradually (but got very intense).

 

[dragonfly]

gosh im sorry about your daughter, i hope she is getting better now. did her drs take her off of remicade then? is remicade something you can just stop or do you have to gradually be taken off?? my 2nd dose is tomorrow and during my 1st maybe 10 mintues into my blood pressure dropped the nurses just gave me more benidril i ended up falling asleep and when i woke up the infusion itself was over i was getting the bag of saline then. i do have an appt right after my 3rd dose with the remicade nurse and getting some blood work done as well, is this why the schedule this after the 3rd dose?

 

[Ian]

I never noticed any side effects after the infusions . Not even after the 3rd - which granted was my last one, but not because of a bad reaction, because of bad medical practice lol (not strictly true, but kind of - long story). Hopefully it will be a breeze for you too. The only thing I suffered with was BOREDOM. Take a book!

Strange thing is I craved cheese lol

Haha brilliant.

 

[PaulsPain]

I just had my 3rd infusion yesterday. Right after the infusion I feel exhausted. I still go into work though - probably not the most productive day. Today I have some pretty intense nausea. I had the same thing happen after my first dose but the nausea subsided after a day(thankfully). After the second dose I didn't have any nausea but after 3-4 days I had some chest/muscle pain. I will see if it happens again with this dose.

I have also read the 3rd dose can be problematic for people. So I was pretty nervous yesterday. And I still don't feel I am out of the woods until I get about 7-10 days out.

 

[Crohn's 35]

For some reason, apparently (I haven't seen the data that supports this but have been told by doctors and infusion nurses) the third dose is statistically most likely to be the one where patients who are going to have an adverse reaction, have one.

In my daughter's case it was not an acute reaction during the infusion, it was weeks later and came on gradually (but got very intense).

Yes this is true... I had a bad reaction, so bad that Demerol and 2 perocets a couple of hours later, wouldnt touch it. I was taking to ER and they gave me demerol and told them I was on Remicade and said not to get it again...Ya think??? It was in the lymph nodes in my arms and couldnt move my arms for 3 days, then went up to my jaw, and I was scared it was gonna go near my heart....it didnt, instead when into my foot and swelled and was black and blue and had to use crutches to walk... Scared was putting it mildly but it doesnt have to everyone, I react to alot of drug.

 

[dragonfly]

thank you all for sharing your experiences!! hope you all are well now and stay well! im keeping my fingers crossed and saying a prayer that all goes well with me!

 

[deedee]

It's different for everyone. I always get VERY tired for a few days after my infusion. But it goes away. I try to plan it for a friday afternoon so I can have the weekend to recover, but that doesn't always work out. good luck!

 

[ThanksP]

Oh my, Pen. That is absolutely awful. That must have been terrifying.

Thank you, all. I appreciate knowing the good, the bad, and the ugly so I can mentally prepare myself for anything. I'm one of those worst case scenario people but it works for me quite well.

 

[Crohn's 35]

Oh my, Pen. That is absolutely awful. That must have been terrifying.

Thank you, all. I appreciate knowing the good, the bad, and the ugly so I can mentally prepare myself for anything. I'm one of those worst case scenario people but it works for me quite well.

Yes it was, and I had call my husband at the mine that I needed him.. after that call I dropped the phone... and couldn't get out of bed or move to pick it up, all the drugs where wearing off. Thank God his company flew him home that early morning and he got a taxi home and was here to help me. Yes, I was alone. Thank God for great neighbours and one who was a chief paramedic. I hate telling this story because it is very rare, but I still think it is good to get it out. :shifty-t:

 

[Boroukee07]

It's different for everyone. I always get VERY tired for a few days after my infusion. But it goes away. I try to plan it for a friday afternoon so I can have the weekend to recover, but that doesn't always work out. good luck!

Ditto!!! Although everyone is different, I do feel tired for a few days after my infusions which are given on a Monday but my next one is a Friday because of a bank holiday (in Ireland) and that should help me out with the fatigue that I feel in the days after the infusion. But I put the fatigue down to the piriton!

 

[ThanksP]

Well, just had my first infusion yesterday morning. I felt a little tired, legs felt a little achy (might have been from a run the day before tho), and my arm hurt from the HepA/B vaccine they gave me. So all in all, not so bad at all. Today I feel about 80% so far so that's good.

Had a good time swapping pictures with my nephew. We were getting our infusions at the same time, just in different states. We came to the conclusion that I had a more comfy chair but he had a TV, and the Florida Gators football team visited him. I got a free cup of coffee LOL.

 

[dragonfly]

glad all went well!! best of luck to you!!