Remicade - How do you feel immediately afterwards

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krahsdnal

krahsdnal

Joined
Dec 18, 2009
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133
How do you feel after having the remicade treatments?

I have noticed that I am more fatigued than normal and would love to just nap the day away. Also seem to get the chills, anyone else?
 
I am the opposite. I am fatigued a week before my treatment is due. I feel energized after my treatment....I say it's my 'go-go' juice. I don't take Benadryl beforehand because it zonks me out. Do you premedicate?
 
I used to be a little run down, but more from the stress/annoyance of being jabbed with needles and having to sit in the hospital all day.

Health wise I felt fine, sometimes a little feverish.
 
I am the same as IMP, it feels like an energy boost to me. I actually used to look forward to my infusions. I also did not get the Benadryl.
 
I dont premedicate. CH is prolly right, maybe it is just because I am sitting in the infusion room for a couple of hours. I had my infusion today, it is also possible that since i am flaring now and not feeling 100% anyway
 
krahsdnal said:
I dont premedicate. CH is prolly right, maybe it is just because I am sitting in the infusion room for a couple of hours. I had my infusion today, it is also possible that since i am flaring now and not feeling 100% anyway
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Aye. Never got pre meds anyways. Think I just felt run down from flaring and then having to deal with the hassle of it all.
 
See, I enjoy it...It is relaxing for me. If I could just get a facial it would be like a day at the spa.
 
Not for me. Go in there, sit around, get poked, watch TV, occasionally get my ear talked off by some annoying patient.
 
lol. There was one patient in particular that happened to be on the same schedule as me and she drove me batty. Constantly trying to diagnoise me and offer me "Catholic treatments"
 
CrohnsHobo said:
lol. There was one patient in particular that happened to be on the same schedule as me and she drove me batty. Constantly trying to diagnoise me and offer me "Catholic treatments"
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Too funny! They just built a new cancer treatment center at the hospital I go to. Very beautiful, peaceful and serene!. However....where we sit to get the infusions is not as "private" as it used to be in the old center. My last infusion 2 weeks ago..I was in the middle of 2 family reunions! My god I thought they were going to have to start selling tickets for seating!!! And noisy?!?!?! Oh my goodness what a joke...I was trying to sleep from the benedryl...but a plus on this was they were making so much noise, no one could have heard me snoring!

:ylol:
 
I have had two infusions of remicade thus far, still in my induction period. I have been incredibly fatigued since my first infusion 3 weeks ago. Since my colon was pretty messed up when I started, I am hoping that it is just a matter of my colon healing, enabling me to absorb more nutrients and then I will see a turn around in my energy levels. Anyone else with this same dilemna?
 
I feel a little tired, but since I switched from benedryl to claritin, I dont get drowsy anymore.
 
I feel tired, and weak right after my infusion. And the last time I went I had chest tightness. I am on Benadryl and Tylenol pre-meds, but even before the Benadryl pre-med I have always slept after my infusions.
 
Im on the tired side. No pre meds or anything but I have a feeling its because of sitting in that chair not moving for 3 hours. Other than that Im pretty well feeling normal.
 
I've been on it since Oct 06. I take the Benedryl to knock me out so I don't have to be bored for three hours, I go home and sleep for a couple more and feel great. I read somewhere that immunosupressants can make the adrenal gland hypersensitive. I'm inclined to believe it because if I hit the gym within 48 hours after I get an incredible work out.
 
When you guys talk of being feverish, is it right afterwards, or can is come a week after? My son had his second infusion 6 days ago. He's had a fever last night and today. He says he feels fine...but did throw up his dinner tonight...but he said he thinks he gagged on snot in his throat. I hope he isn't getting sick again...he started an antibiotic on monday (day before his infusion) for strep throat. This poor little guy can't catch a break!! He's been off azathioprine since Dec 8th, could this be the culprit that keeps letting him catch infections...or the Remicade? As you can see, I'm getting confused and don't know where to turn. Thanks for any help. Also, what is the reason for pentasa if you are on Remicade? Our GI says its because Pentasa has a cancer fighting quality. It seems to cause our son acid reflux (That feeling of snot in his throat). One doc said that was a side effect of Pentasa if its taken close to a meal. Has anyone heard that?
 
Last edited:
Brian'sMom said:
When you guys talk of being feverish, is it right afterwards, or can is come a week after? My son had his second infusion 6 days ago. He's had a fever last night and today. He says he feels fine...but did throw up his dinner tonight...but he said he thinks he gagged on snot in his throat. I hope he isn't getting sick again...he started an antibiotic on monday (day before his infusion) for strep throat. This poor little guy can't catch a break!! He's been off azathioprine since Dec 8th, could this be the culprit that keeps letting him catch infections...or the Remicade? As you can see, I'm getting confused and don't know where to turn. Thanks for any help. Also, what is the reason for pentasa if you are on Remicade? Our GI says its because Pentasa has a cancer fighting quality. It seems to cause our son acid reflux (That feeling of snot in his throat). One doc said that was a side effect of Pentasa if its taken close to a meal. Has anyone heard that?
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Most of the time they will not let you have an infusion if you are being treated with antibiotics. I have seen my clinic turn people away for being on antibiotics. Something about not letting people with active infections get it. I am surprised they let him.
 
Lydia said:
Most of the time they will not let you have an infusion if you are being treated with antibiotics. I have seen my clinic turn people away for being on antibiotics. Something about not letting people with active infections get it. I am surprised they let him.
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Is it because the Remicade can cause the infection to get worse, or last long? I was surprised too. I think they didn't want him to mess up his induction period since he wasn't doing well on azathioprine. His strep went away promptly...but the amox he was taking for it messed him up. He could only take it for 9 days. He ended up with what may have been a possible abcess at the bottom of his rectum.(Now we know that was why he had the low grade fever) He's on flaygl/cipro now...and feeling really good. Its helping all his symptoms...even his cramps. Maybe his Remicade is kicking in now :)
 
Brian'sMom said:
Is it because the Remicade can cause the infection to get worse, or last long? I was surprised too. I think they didn't want him to mess up his induction period since he wasn't doing well on azathioprine. His strep went away promptly...but the amox he was taking for it messed him up. He could only take it for 9 days. He ended up with what may have been a possible abcess at the bottom of his rectum.(Now we know that was why he had the low grade fever) He's on flaygl/cipro now...and feeling really good. Its helping all his symptoms...even his cramps. Maybe his Remicade is kicking in now :)
Click to expand...

Yep, it can cause an infection to go out of control.
 
When i first started i was tired for about 4 days.

Now i am down to about 2 days and then back to normal.

txs, Franko
 
I start tomorrow morning for my first infusion.......can i bring books, headphones, ipad? Is it.like on the airplane where u can be on the intetnet??? I.know, sounds silly but i get bored real fast and am an always on the go type!! Do u guys and gals bring books and stuff or just sleep??
 
I usually get really tired for 2-ish days after my infusions. I just try to schedule it so I can take it easy for a few days.

Cmk - you should be able to bring all of those things! Definitely bring stuff to keep you entertained. As for whether they have internet - it depends on if your hospital has wifi, but if you have an ipad with 3G you should be able to use it normally. Good luck!
 
Deedee thanks! I'm on my iPad right now getting my first infusion.....I have too much energy, hard to sit still!
 
Cmk said:
I start tomorrow morning for my first infusion.......can i bring books, headphones, ipad? Is it.like on the airplane where u can be on the intetnet??? I.know, sounds silly but i get bored real fast and am an always on the go type!! Do u guys and gals bring books and stuff or just sleep??
Click to expand...

Even my little 12-bed hospital out here in the boonies has WiFi.
I'd be surprised to find there are many out there that don't...
 
So is it weird that a day and a half after my first infusion I am already getting relief! I usually get up like 3 times a nite to go to the Jon, but not at all last nite and have been in their alot less today.....I'm super pumped but afraid it'll go away....I guess Ill take it a day at a time and just be grateful and thankful.....I too was a Lil tired, I think from the Benny, I did the head bob a bit while in the chair....but after I went to work then cut the grass, so I dunno.....I go for second one on the 25th so I guess we shall see!
And I was psyched to have wifi in there.....still bored tho. :)
 
I get extremely tired after the infusion. This lasted a week for the first one but only about 3 days for the last one (with each day getting progressively less tired). I've been pretty tired just from being sick anyway though. Other than getting tired and spacey, I don't have any side effects. Getting my third one friday.
 
After being on for 6 years, off for 2, and then on for 3 again, the symptoms and effects are always the same for me. I get really tired after the infusion. I will start feeling the benifit 3-4 days later. Never had a reaction.

Started on 5mg/kg /8weeks. If anyone was wondering, remicade can loose effectivness after years. For me I had to cut it down to every 6 weeks, then every 4, and then up the dose to 10mg/kg because the effects stopped lasting as long between infusions. However that was after a 6 year run.
 
For me it's how do I feel right off the bat. I get Benadryl, anti nausea and generally 10mg of morphine at some point from the crushing headache I get. It's unreal. When I first started on it it wasn't too bad. When headaches are a side effect, you have to slow the drip down and that makes my stay, with the premeds about five hours. It's ok, the staff is great and the environment is comfortable. Since we slowed down the drip, I have not needed a second dose of morphine, which is good because that really throws me for a loop. I am washed out and tired for a couple of days after that, always have been, even before the headaches.
 
I had treatment number 2 last week and can relate to being tired afterwards. For me, I've noticed not fever, but more like hot flashes during the days following the infusions up to 4 or 5 days, then I feel fine after that.
 
Im on Remicade infusion #2.... no side effects except a little joint stiffness the day of the infusion and a little less joint pain on the second day. Im also extremely zonked out from all of the Benadryl for a few hours after my infusion
 
I'm not on Remicade now, but when I was taking infusions I would be wiped out afterwards. I did take the Benadryl to premedicate. Next day I was fine though.
 
I had my first remicade treatment on May 16. 4 hours after the infussion I experienced extreme tingling in my legs, feet and arms. I contacted a healthline and was advised to go to emergency. This ended up being a very rare but normal side effect.
 
Hi all, am going for my first infusion tomorrow morning. Trying to get some sleep as I have to be there at 8:00 am. Also on 60mg prednisone so just took some Benadryl and Ativan to try together to sleep!! It's after 1am!! I'm not really nervous but just a bit apprehensive as to how ill feel since everyone has a different story. I'm an RN so know the deal, but am also hoping I don't have some reaction so I won't be able to take it!!!
 
Hi, I am new to the forum. Tomorrow will be my third infusion and I am a little scared because 6 weeks ago I had an infusion and I got really sick a week after. I first broke out in Shingles over my eye(not pleasant), then I get an upper respiratory infection which I had to take antibiotics for which also gave me diarrhea, and now I seem to have this chronic cough that's been going on for 3weeks. I was told that it's normal and it won't be like that every time, but Shingles, really?? :-( Has anyone experienced this. Dxd in 2009 for Crohns
 
right afterwards i am very very tired. like i could sleep for days. i get home at 6pm from my treatment and i sleep until the next morning.
 
When I 1st stated I would get tired and found it hard to concentrate for 3 days after a treatment. Now, two year later I no longer feel tired. Concentration is still a little off but not as bad as it was. I find now after a little catnap after my treatment I am good to go by night time.
 
I am always tired after my infusions. I also notice I feel a slight pressure in my head. It's kinda hard to explain. I noticed my blood veins were really dark and large, like I just lifted weights. I just had my infusion 2 days ago. Have had a headache today and yesterday. Usually the headaches come with my menstral cycle and if I physically expert myself, like in a workout. Usually these symptoms improve toward the end of the first month.
 
I had my first Remicade today and feel really good, relieved to get it over with .
I was not given any benadryl or painkillers, did not need them anyway.
Hope the next session in two weeks is as good as today.
Trysha
 
I actually look forward to my infusions!

Soon as im finished, I get the 'munchies' and eat so much for 2 days, pizza..fries the lot!

I sleep like a baby for around 2 nights, tired and somewhat relaxed i guess.
 
I felt really tired after my first one. I dont' think it was just from sitting in the clinic because I felt tired for a few days; I went to the gym the next day and I felt like I had no push in me.
 
Tired. I was on it for 3 years or so and it wore me out for the rest of the day.
 
Had my second Remicade infusion two days ago.
The IV went interstitial after the first half hour so they had to make a new IV site. Things settled after that.
I did notice a slight headache in the first hour and then a feeling of light headedness twice.
I kept concentrating on the DVD and made it ok.
However I was very tired once home and it is still with me plus a bit of unsteadiness.
Also at intervals I get a hot feeling which does not last.
Just taking it easy and will do for a few days.
This week will be seeing the GI----routine appointment.
The crohns symptoms are a lot better and I am able to sleep nights for the first time in several years.Well worth the IV discomfort.
Hopefully a return of appetite will occur soon.
Next Remicade will be in six weeks time.
Trysha
 
I have my first infusion last week and the same tired afterword no side affects. Premed with beni. Been feeling good. First time in a long time. Having a flare now, but its not half as bad as it used to be:ysmile:. Next infusion next tuesday 26th.
 
Hello, I have the date for my first infusion now -18th March.
I also have a job interview next week. I was wondering - are your employers good about you having to have appointments every 8 weeks?
I will probably bring it up at the interview so that they know about the crohn's. Are you able to go back into work after you have had an infusion or do you have to take the whole day off?
Thanks.
 
My infusions have been in the afternoon, so I haven't had to come back to work. My next one is in the morning though and I'm debating taking a day of Annual leave so I don't have to come in. There's no reason why I couldn't, but I have felt sleepy afterwards.
 
xX_LittleMissValentine_Xx said:
Hello, I have the date for my first infusion now -18th March.
I also have a job interview next week. I was wondering - are your employers good about you having to have appointments every 8 weeks?
I will probably bring it up at the interview so that they know about the crohn's. Are you able to go back into work after you have had an infusion or do you have to take the whole day off?
Thanks.
Click to expand...

I usually get my infusion in the afternoon, then go home after.....I have had to get it done in the morning a couple times, and have gone to work afterward with no problems. I do get benadryl before the infusion, but by the time I'm done and ready to go, any effects have worn off.

As far as having the appointment every 8 weeks - my bosses are ok with that, and I have it on the calendar for the entire year so schedules can be worked around it. I usually take a couple hours off (I will work 7-12 those days, with a 7.5 hr work day) - but have also been able to work a longer day or two before/after the inbfusion date to avoid having to use time.
 
I guess I'll just have to say to them at the moment I don't know how it will be, but we should be able to work something out. My appointments are at 8.30 and they said be prepared to be there for 5-6 hours.
 
shouldn't take more than 3 hours most of the time. maybe 15 mins to put in the cannula and administer hydrocortisone, then 2 hours being given the drug, then 30 mins flush with saline. After a few times, provided you don't get any reactions then they will administer it over 1 hour instead. I would probably allow more time the first time though, I know it took me 5 1/2 hours but that was only because they didn't have any recent bloods for me so had to take some and go test it before they would let me start.
 
xX_LittleMissValentine_Xx said:
Hello, I have the date for my first infusion now -18th March.
I also have a job interview next week. I was wondering - are your employers good about you having to have appointments every 8 weeks?
I will probably bring it up at the interview so that they know about the crohn's. Are you able to go back into work after you have had an infusion or do you have to take the whole day off?
Thanks.
Click to expand...

Hello :)
I advised my employers about my condition at the end of the interview, and advised them that I have to go in for treatment every 6 weeks and need atleast half day off, they were very understanding.

You will be covered by the disability provisions of Equality Act, which basically means they cannot discriminate you and by law you are allowed additional time off for routine appointments/treatment (and you shouldn't really be asked to make up the time/days)

Hope this helps.

Good luck for the interview!
 
5-6 hours seems like a long time.
I was told to be prepared to stay for 4 hours for my first infusion, but I didn't stay for the extra our of monitoring. It takes 2.5-3 hours at my clinic depending on whether the doctor is late or not.
 
@ all from Québec:
In which interval are you guys taking Remicade after the induction phase? Every 8 weeks or 6 - 8 weeks? I have no clear idea on that as I was not able to find any further information... Appreciated if one of you could help me out with a reliable source where I can find the information I am looking for :)

Thank you very much for your support!

Benjamin
 
Benjamin, the interval of your treatments depends on your disease and your doctor. It's usually every 8 weeks to start. You should ask your doc this.
 
I feel really woozy and sleepy after each infusion I have! Had an infusion yesterday having had the best night sleep previously, but once I got home I was knackered and slept the afternoon away, and then only slept for about an hour last night lol
 
xX_LittleMissValentine_Xx said:
I guess I'll just have to say to them at the moment I don't know how it will be, but we should be able to work something out. My appointments are at 8.30 and they said be prepared to be there for 5-6 hours.
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hi there , i was told around 4 - 5 hours, and i was there for around 4 hours.

once im setup (depending on the amount of people in the que) the infusion is for 2 hours and then have to stay for 1 hour afterwards.

The first 2 infusions went fine and i went straight back to work in the afternoons, but after my last 1 i felt so tired i couldnt do anything and got sent home.

so on my next one i intend to have the day off.

My employer was ok to begin with, but because everyone is now moaning at the time im having off and being paid the management is starting to think im taking the michael. im starting to book the time off as holliday just to shut them up. right or wrong i dont know, but it gets me down when i know everyone is doing nothing but complaining about me.

chris
 
christian_jb said:
hi there , i was told around 4 - 5 hours, and i was there for around 4 hours.

once im setup (depending on the amount of people in the que) the infusion is for 2 hours and then have to stay for 1 hour afterwards.

The first 2 infusions went fine and i went straight back to work in the afternoons, but after my last 1 i felt so tired i couldnt do anything and got sent home.

so on my next one i intend to have the day off.

My employer was ok to begin with, but because everyone is now moaning at the time im having off and being paid the management is starting to think im taking the michael. im starting to book the time off as holliday just to shut them up. right or wrong i dont know, but it gets me down when i know everyone is doing nothing but complaining about me.

chris
Click to expand...

Hi,

You shouldnt have to use your holidays for genuine medical conditions, you are allowed to have time off for your infusions! I would strongly urge you to speak to a senior member of staff, or go straight to Human Resources and tell them about your condition and that you need time off for that day (Paid!)

People out there who do take the michael but why do genuine sufferers like us who have to have fingers pointed at?

No matter if the company is small or big, by law you are allowed time off.

Wishing you best of health!
 
Maxwheel said:
I get extremely tired after the infusion. This lasted a week for the first one but only about 3 days for the last one (with each day getting progressively less tired). I've been pretty tired just from being sick anyway though. Other than getting tired and spacey, I don't have any side effects. Getting my third one friday.
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Sounds familiar. Just had my third yesterday. Feel very tired and goofy today
Bit weird altogether
 
I was exhausted on day one, tired and muddle-headed day two, and feeling fantastic on day 3 if you discount the bronchitis I came down with yesterday. BUT it is just a bump in the road. Doc thinks I was incubating it and the Remicade pushed me over the edge.
 
Perhaps a bit more tired, but the 40 mg of prednisone on the day negates it a bit, and so I actually find it difficult sleeping, even though I feel tired. Hehe!
 
I don't really feel fatigued at all after the remicade. In fact, it's like just another day. That being said, recently I have been feeling lousy before the remicade... Oh well...
 
I feel pretty good after, my UC symptoms subside almost immediately after the infusion. I've only had 2 so far though. I am pretty tired but I also get mine right after working 3 nights in a row, since the infusion center is at the hospital I work at so I am probably tired more from that then from the actual Remi.
 
I feel like I have the flu for 3 days. I was wondering if slowing down the drip would change that. Any ideas?
 
I used to be on 5 mg/kg and that typically made me tired for 1 day, but I've since put on about 15-20lbs of muscle and am now on 10 mg/kg. At this dosage and with the additional weight (more remicade) I feel tired for weeks. I just deal with it though, part of life now you know?
 
carrollco said:
Good to know. I have no idea how much I am on. Never thought about asking.
Click to expand...

I think 5mg per 1 kg of your body weight is the standard starting dosage for most physicians.

So when I was around 175 lbs receiving 5 mg/kg, that was...
175lbs / 2.2046 kg X 5 mg/kg = 396.9 mg

and now, 10mg/kg at 210 (I've added more muscle than I mentioned in my post)

210lbs / 2.2046 kg X 10mg/kg = 952.6 mg

Of course I'm more tired when you look at it this way lol. I've been asking my doc if I can get dropped down to 7.5 mg/kg but no luck yet (did manage to get moved from every 7 weeks to every 8 weeks.)

While there's likely not a linear relationship with dosage & side effects, one could reasonably assume that your risk of side effects increases with the dosage.
 
I feel tired about half way through my infusion, I usually sleep a little in the car on the way home. Then I'll have this random burst of energy in the evening. The next day I am sleepy, achy and have joint pain. I just had my third infusion on Monday....today I had A LOT of energy....it was also my first day back to work after 3 months off:smile:, because of Crohn's...I then took a 3 hour nap this afternoon! ha ha:tongue: I'm sure it was a combo of back to work/Remicade!
 

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