I just had a second colonoscopy since being diagnosed and my GI doctor wants to treat my Crohn's aggressively and thinks we should start the Remicade treatments for one year. I am aware of the long term side effects of the treatment but are there any side effects at the time of treatment... like while you're sitting with the iv in arm and having the meds administered. I'm just curious what others experiences were just for a little more of an idea.
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Remicade- first treatment
- Thread starter Summarie
- Start date
I havent had any side effects as yet, and am on my 8th dose.
I was aprehensive the first time - well really scared is the truth!!
They check you every 30mins - temp, pulse, blood pressure, and breathing. Some of the other patients assured me that if you do get a reaction, the nurses who adminster the Infliximab are well rehearsed in treatment.
I take some magazines and lots of naughty snacks. Its really boring, but i try and treat it as 'me' session.
Good luck!
I was aprehensive the first time - well really scared is the truth!!
They check you every 30mins - temp, pulse, blood pressure, and breathing. Some of the other patients assured me that if you do get a reaction, the nurses who adminster the Infliximab are well rehearsed in treatment.
I take some magazines and lots of naughty snacks. Its really boring, but i try and treat it as 'me' session.
Good luck!
The biggest side effect is boredom lol. Because it takes ages, so bring something to do, I used to take my laptop and DVDs, magazines, snacks are a must, one time my infusion took 8 hours, I had my friend with me and she went and got us McDonalds and we had loads of magazines and stuff, it was pretty fun!
That said you can develop side effects from it, I had no trouble my first few, then over time I got small reactions, I threw up during one of them, I threw up the next one, then the next one I threw up and got a rash and my lip swelled up a teensy bit. They stopped the infusion and gave me antihistamines and steroids and then did it at a slower rate and I was fine, but after that my Dr decided to switch me to Humira in case I got a worse reaction next time.
Try not to worry about side effects, if you get any they're likely to come on slowly and the nurses always do a 'test' infusion which is a few drips in then wait, then proceed with the infusion, like Deb said they check you every 1/2 hour and there's always nurses in the room. My Dr said he's never witnessed a bad allergic reaction except once I think, and this is because they're so careful, if you are going to get allergic it'll likely be like I did, and I wasn't scared at all I just changed drug.
As for side effects, I had one fantastic side effect post-infusion - healing! Infliximab healed my ulcer like a miracle, so you should look forward to your infusion because it's good stuff
That said you can develop side effects from it, I had no trouble my first few, then over time I got small reactions, I threw up during one of them, I threw up the next one, then the next one I threw up and got a rash and my lip swelled up a teensy bit. They stopped the infusion and gave me antihistamines and steroids and then did it at a slower rate and I was fine, but after that my Dr decided to switch me to Humira in case I got a worse reaction next time.
Try not to worry about side effects, if you get any they're likely to come on slowly and the nurses always do a 'test' infusion which is a few drips in then wait, then proceed with the infusion, like Deb said they check you every 1/2 hour and there's always nurses in the room. My Dr said he's never witnessed a bad allergic reaction except once I think, and this is because they're so careful, if you are going to get allergic it'll likely be like I did, and I wasn't scared at all I just changed drug.
As for side effects, I had one fantastic side effect post-infusion - healing! Infliximab healed my ulcer like a miracle, so you should look forward to your infusion because it's good stuff
Dukeis
Dynastic Overlord
You can have an infusion reaction. This why they give it to you in a clinic or hospital. You may want to read up on that also. If that happens they stop the infusion and give you meds to counter the reaction.
I had 49 infusions over a 7 year period and never had an infusion reaction. They would also pre -medicate me with IV steroids, PO bendryl and PO Tylenol before the infusion to ward off any reaction.
Why are they telling you only use remicade for 1 year? Once you stop it you'll develop antibodies to it and may not be able to restart it if you need it again.
I had 49 infusions over a 7 year period and never had an infusion reaction. They would also pre -medicate me with IV steroids, PO bendryl and PO Tylenol before the infusion to ward off any reaction.
Why are they telling you only use remicade for 1 year? Once you stop it you'll develop antibodies to it and may not be able to restart it if you need it again.
kiny
Well-known member
Like dukeis said, some people get an adverse reaction during the infusion. It's called anaphylaxis.
I've long stopped taking infliximab since years, I only got it for a few months but I often spend some time in a hospital talking to people, I have seen 2 anaphylaxis reactions in people to date.
The symptoms are that they will suddenly have a hard time breathing, it's like someone is choking you, they will have a hard time talking, in both cases they couldn't speak very well, their face tends to get red and bloated, in one case the person lost consiousness. What immediately happens is that they give medication to stop the reaction and pull the infliximab tube. You should always watch people sitting around you and take care of them because when something happens they can usually not speak. This is why you need to be in a hospital, it's something that happens in a matter of seconds. Immediately shout for help when you feel like you're getting a reaction.
This is also why you are not supposed to drive and should take a driver with you if you take infliximab, because there is a window of a few hours after the infusion that an adverse reaction can still happen. The chance is much smaller though.
I've long stopped taking infliximab since years, I only got it for a few months but I often spend some time in a hospital talking to people, I have seen 2 anaphylaxis reactions in people to date.
The symptoms are that they will suddenly have a hard time breathing, it's like someone is choking you, they will have a hard time talking, in both cases they couldn't speak very well, their face tends to get red and bloated, in one case the person lost consiousness. What immediately happens is that they give medication to stop the reaction and pull the infliximab tube. You should always watch people sitting around you and take care of them because when something happens they can usually not speak. This is why you need to be in a hospital, it's something that happens in a matter of seconds. Immediately shout for help when you feel like you're getting a reaction.
This is also why you are not supposed to drive and should take a driver with you if you take infliximab, because there is a window of a few hours after the infusion that an adverse reaction can still happen. The chance is much smaller though.
Just had my first Remicade infusion and had approached it with great trepidation and misgivings.
All that worrying for nothing.It was very straightforward.
The nurses checked vital signs every fifteen minutes and were very vigilant.
No antihistamines were given and no steroids....I was fine without them.
After four hours I was ready to leave.Mission accomplished.
I walked to the front door and had planned on a taxi home., however there was a bus outside the door so that's how I went home.
Once indoors a sudden tiredness descended but I had not been able to eat all day, just had a protein shake in the morning and juice and water in the afternoon during the infusion.I had taken the fluids with me but the nurses told me they had juice or drinks if needed, also included ensure which is not my favorite.However, nice of them to provide it if requested.Lack of appetite is one of my symptoms.
I slept well afterwards and had less pain that night and the next.
Today still a little weary and a few return symptoms of the flu I started three weeks ago.
The symptoms had gone but came back with the infusion', the next day my GP ordered a chest Xray which was clear.
Previuosly just over a year ago I had a dangerous anaphylactic reaction to Cipro and Metronidazole, lots of drama but I was recovered by the medical team and spent a week in hospital after that.Had never been treated with Cipro and never will be again.
This played on my mind when Remicade was first mentioned so I was doubly worried
about a reaction.
Relieved its over till the 31st January, and expect things to be ok at that time.
Trysha
All that worrying for nothing.It was very straightforward.
The nurses checked vital signs every fifteen minutes and were very vigilant.
No antihistamines were given and no steroids....I was fine without them.
After four hours I was ready to leave.Mission accomplished.
I walked to the front door and had planned on a taxi home., however there was a bus outside the door so that's how I went home.
Once indoors a sudden tiredness descended but I had not been able to eat all day, just had a protein shake in the morning and juice and water in the afternoon during the infusion.I had taken the fluids with me but the nurses told me they had juice or drinks if needed, also included ensure which is not my favorite.However, nice of them to provide it if requested.Lack of appetite is one of my symptoms.
I slept well afterwards and had less pain that night and the next.
Today still a little weary and a few return symptoms of the flu I started three weeks ago.
The symptoms had gone but came back with the infusion', the next day my GP ordered a chest Xray which was clear.
Previuosly just over a year ago I had a dangerous anaphylactic reaction to Cipro and Metronidazole, lots of drama but I was recovered by the medical team and spent a week in hospital after that.Had never been treated with Cipro and never will be again.
This played on my mind when Remicade was first mentioned so I was doubly worried
about a reaction.
Relieved its over till the 31st January, and expect things to be ok at that time.
Trysha
You all are so awesome. I just joined the forum and had no clue people were so willing to help each other out. It's really reassuring knowing I'm not the only one who's going through this. So pretty much my biggest task right now is collecting enough things to entertain me when I get there? That should be pretty easy. I have a ton of shows to catch up on and I'll bring my laptop and use that time to watch them. Thanks again!
I just had my second yesterday. Yep, it takes a few hours, so bring books, iPad, or just be prepared to chill-axe for a bit. Does anyone else get hungry? No, I mean like hungry?? I was starving by the end of each.
I had a weird reaction today, just about 24 hours later, had a cocktail and during the second one, got very "congested", very quickly and stared having trouble breathing, mostly through my nose. Started panicking a bit, but kept it under control until I got home and took some benedrille, which made everything all right...... Is this normal??
All in all, I must say that I feel friggin great for the days following the infusion thus far-focused, energetic, etc....... I hope that episode today was just fluke....
Jason
I had a weird reaction today, just about 24 hours later, had a cocktail and during the second one, got very "congested", very quickly and stared having trouble breathing, mostly through my nose. Started panicking a bit, but kept it under control until I got home and took some benedrille, which made everything all right...... Is this normal??
All in all, I must say that I feel friggin great for the days following the infusion thus far-focused, energetic, etc....... I hope that episode today was just fluke....
Jason
I have not had any reactions in the 2 infusions I have done. I did get super sleepy after they gave the liquid Benadryl pre-meds and zonked out for a while both times, which helped pass the time. They give me a private room with a TV (with cable) and a DVD player. I've had people with me the past two times but next time I will be alone, and I plan to stop and get a RedBox DVD to watch.
Other than being a little drowsy during the first part of it, the treatments have gone smoothly for me and I didn't feel badly at all afterwards. Last time I even had the energy to take my dogs for a 1.5 mile walk soon after getting home.
Good luck, I know it sounds intimidating, but this is the first time I've ever had an IV (besides when I did the colonoscopies) and was pretty nervous initially. Once you are there, you should have plenty of staff available to monitor for reactions and answer any questions or concerns you may have.
Other than being a little drowsy during the first part of it, the treatments have gone smoothly for me and I didn't feel badly at all afterwards. Last time I even had the energy to take my dogs for a 1.5 mile walk soon after getting home.
Good luck, I know it sounds intimidating, but this is the first time I've ever had an IV (besides when I did the colonoscopies) and was pretty nervous initially. Once you are there, you should have plenty of staff available to monitor for reactions and answer any questions or concerns you may have.
I wasn't hungry at all by the end. In fact, I barely felt like eating. I came home, made some tea and went to bed.