Starting Remicade Wednesday! Any advice?

[25times]

So I was finally approved for remicade, and my first infusion is this Wednesday. To be honest, I am a little nervous. Prednisone was working pretty well for a bit, until I started tapering, then I flared again. The main goal was to get remicade as soon as possible, but the financial aspect stopped me until now. Now that it's actually happening, I find myself wondering about the side effects, if it will even work, how will I feel before/during/after?

What kind of things should I really keep an eye on, in terms of side effects? I know any signs of infection should be reported immediately, but what else? Have many of you developed infections because of remicade?
How soon did you start feeling better? Does it make you nauseas? Sleepy? Does it hurt? What kind of (if any) reaction did you have to it?

My GI has ordered two premeds to be taken before each infusion. 50mgs prednisone and 50 mgs benadryl. Is this normal?

Of course, I'm being paranoid. This is a scary drug. I really, really hope it works for me. I can not live this life for much longer. It's not even a life. I just lay on the couch, all day every day, and sleep. I'm so sick of feeling sick. If remicade doesn't work then I will have to have surgery, at least to take out the foot of diseased, strictured bowel. It's causing me alot of problems. But my GI says remicade is really good for healing fistula's, which is basically what I have. It just goes from one part of my intestine to another part. But it's getting dangerously close to opening in my uterus, which we don't want.
Thanks for any words of wisdom or advice or experiences you can give me. I really appreciate it.

 

[Lydia]

I had 100 mg cortizone and 50 mg benedryl with my infusions. I would also take 2 extra stregnth tylenol right before, incase they sucked at putting in an IV. I also read somewhere that tylenol can prevent that flu like feeling some people get. I got sleepy but thats likely from the benedryl. If you dont like the benedryl you can switch to something like reactine or claratin with your GPs approval, which I did later on. Then I didnt get sleepy at all.

Remicade worked for me in 4 days. And I never got any acute infusion reactions from it. My boby did eventually reject it, but when it worked it worked awesome.

Bring a laptop, or video game. Its about a 3 hour wait. Bring a treat. Something you really love eating or drinking, like a pastry, or slurpee.

 

[Lisa]

I currently get solumedrol and Benadryl IV before my infusion - don't have any major issues with the Remicade - I've had colds (feel like I'm getting one right now actually) - no major infections - my body has been able to fight off stuff pretty much on its' own -nothing out of the ordinary compared to other people.

As for the fistulas - I think mine healed up within a month - after dealing with them for about 2 years!

 

[KWalker]

I used to take Remicade, until it stopped working for me as well. I had to sit in a chair while I had Remicade in one hand, and iron infusions in the other, and the doctor said I couldnt do much movement during the 5 hour period we did it, but it wasn't bad because I was in the Children's Hospital at the time, so I made some friends, and we would play videos games and that, but then once I turned 18 I had to go to the adult rooms, and all of the older people just sat in their chairs and watched boring daytime drama shows so it got really boring lol.

I don't think I had any side affects from it, however sometimes I wonder if some of these drugs were the cause to my fistula that came afterwards (coincidence eh?) and like a few others said, Remicade stopped working for me completely, and had no effect at all.

 

[setwitheagersails]

hi samantha! it's completely natural to be scared before remicade - but don't be. i worried for days before my infusion. side-effects are extremely rare - if anything, you'll feel great afterward. yes, they can happen, but just channel some good vibes. you might feel a little sleepy, but that's okay. c: i just had my first infusion last week, they gave me 100mg of cortizone like Lydia, and then i think they gave me 50mg of benadryl or something like it.

i broke out in hives about halfway through, but they disappeared almost as soon as they had appeared. it might have been from nerves, but i just had to be under 'observation' for about two hours after i had finished the drip. the nurse told me they'd just up the dose antihistamines the next time i get an infusion.

everyone is right, it gets pretty boring. my phone died halfway through, and i thought i was going to erupt with boredom, haha. bring a good book or maybe a laptop.

anyways, i've felt tons better. i've had more energy than i've ever had in the past year, and i'm down to going to the bathroom three times a day compared to 10+, and i've only had one session. it's totally worth it, once you actually get the infusion you'll wonder why it was even that big of deal in the first place!

 

[hannah-rose]

GOOD LUCK!!! I hope it brings you some relief and makes you healthier and happier!

 

[25times]

Thanks everyone!
I'm a little concerned about the winter. I tend to get sick alot. But this year I guess I have to get a flu shot (never gotten one before) so maybe I won't get sick.
What are some reasons they can "refuse" to give you your infusion? I know if you have signs of an infection, they can't give it to you. What kind of signs? And what will happen to you if you get it anyways and you have like, a sore throat or something?

 

[Lydia]

I dont do flu shots, but thats my personal choice. I never had any issue getting over colds last winter. I got over them just as easy as my husband and daughter. I take extra vitamin c and d all winter long.

I have had infusions during a cold with no problems. I think they draw the line if you are on antibiotics, have a active bacterial infection, or a fever.

 

[Lisa]

They generally won't give an infusion if you have a temperature, or any sign of an active infection - even something like a cut that is infected.....that being said - I DID get my infusion while I was battling pharyngitis about a month after having strep - had NO voice at all and was covered in a nasty rash (that still hasn't 100% cleared after over a year!)....I was getting infusions at the time in the apheresis unit vs the infusion cllinic, so I basically BS'd my way into getting it.....no ill effects either - voice cleared up after about a week.....

 

[25times]

I don't think I was tested enough before being approved for remicade. Like, tested for underlying infections and stuff. I'm passing alot of mucus.. Actually, I'm only passing mucus. I'm also kind of pissed that I'm not getting my test results back. I had an MRI a couple weeks ago, and haven't gotten the results back. Same for the ultrasound I had at the beginning of the month, and all the bloodwork I've had done. I want to know about these things, even if they're not urgent. I like to know when my inflammation markers go up or down, even just a little bit. And the MRI was to look for abscesses and fistulas. I know I have a stricture, but I've had two doctors mention fistulas.. I've never been told I had a fistula. That's something I would like to know about. And what if I have an abscess, and they just "forgot" to tell me about it. Won't remicade be really bad for that? Maybe I'm wrong. I just like to feel like I'm involved in my health, and I'm doing everything I can to get better. But how can I be, if I don't even know what's going on? I called my GI's office yesterday to get the results, but she hasn't called me back. I wish I could just go online and read my results for myself. Whenever they give me results, they only tell me what they think is relevent. Then I find out about being anemic 2 months later. It's not fair.

 

[dragonfly]

my doctor used to do that crap with me, only tell me what she wanted too. finally i told her im no longer a child (been going to CC since i was 7 i'm now 31) and stop treating me like one then decided not to hold back any longer i explained to her that i thought she was a great dr probably true she is one the best but her people skills sucked a big one and needed much work...ever since then she has been very different, in a good way! she actually gives me printouts of what happened/what went on that day during the appt and she sits down to answer ALL of my questions not just the ones she feels are important! i have many problems with fistulas as well im set to start remicade next friday, im nervous but hopefully that maybe finally have some relief with all these problems! as for the flu shot, i dont believe you will be able to get one, if i remember right you are not to have ANY "live" vaccines while taking remicade. ive been told to just wash hands very often and stay away from sick people!! yeah that sounds easy to do!! my daughter is starting school this year and if its anything like last year in Pre-K she brought home a bug of some kind ALL winter!! we all had flu shots last year and to be honest they sure didnt help much!! im going on now....best of luck to you and please dont be afraid to put your foot down and speak up tell your dr how you feel, if they dont understand then maybe you should look for another one. wish you well!!

 

[Steph<3]

Yay I'm glad you are finally getting Remi! It has been amazing for me so far. Everytime I get my infusions I am usually there for 3 to 4 hours. I always bring my laptop and movies. I have been receiving infusions since March and haven't had any serious side effects. It doesn't hurt at all. I am always extremely tired the day of and at least the day after infusions, but typically feel normal by the third day. Remi didn't work right away for me. It took about three infusions before I felt good, but my colon was extremely inflammed. The only infection I have had while on Remi was C Diff but I just found out that my doc suspected I contracted it before Remi.

I wish you the best of luck on it and I hope it works sooner for you than it did for me. Some advice I have is to try to schedule your infusions on Friday if you work during the week, take Tylenol before your first few infusions, and don't be upset if the Remi doesn work right away. I was told that begin to worry if it doesn't start working after 8 weeks.