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Crohn's Disease Forum » Treatment » Remicade/Infliximab » First Remicade Treatment


11-10-2008, 06:32 PM   #1
My Butt Hurts
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First Remicade Treatment

YAY! I'm alive!!
I have been freaking out about my first Remi infusion, but it was today and it was a piece o' cake.
When I first got to the hospital and asked which way the silver elevators were, they told me I was in the wrong hospital. I insisted that I was at the right hospital and told them the department that my appointment was in, and they said to follow the signs for the GRAY elevators. 'Scuuuuse me! Someone told me silver, God darnit! Apparently it was the first day that the medical oncology infusion department had been in that location. Everything was remodled, no one knew where anything was, and people kept popping in for a tour. The receptionist got locked out of her window every time she left, and had to have someone let her back in. I saw that happen 3 times - hee hee. Even the chairs still had tags on them and no one knew how to make them recline. We finally figured it out - an obvious button, duh.
So... lots of paperwork, 2 Tylenol and 2 Benadryl, then a nice poke in the arm, then I sat for 2 1/2 hours while they checked my blood pressue periodically. If you ever need to pass the time while at your Remi infusion, sending text messages to a cute boy with scruffy beard and a visor does the trick!! The time FLEW by. I didn't realize that there was a loading period for Remi, I have to go back in 2 weeks, then 4 weeks, and then it will be every 8 weeks.
People have mentioned feeling the effects of Remi as early as during the first infusion. Nope - not me, I had to take a crap RIGHT in the middle of it. That's right ladies and gentlemen - you heard it here first. I felt a like a complete doofus dragging the IV on wheels to the can and back. Can't tell if I feel any better yet, will see tomorrow. I did have a bigger appetite for dinner, maybe that's a start...
11-10-2008, 07:14 PM   #2
RHOV
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welcome to the remicade club!

during my first infusion i had to get up to go to the bathroom too. several times. but after a day or two, i was MUCH better. hopefully the same thing will happen to you too!
11-10-2008, 07:15 PM   #3
drew_wymore
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My Butt Hurts said:
Nope - not me, I had to take a crap RIGHT in the middle of it.
Jesus that's sexy.
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11-10-2008, 08:00 PM   #4
My Butt Hurts
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OH FOR THE LOVE OF GOD!!!

That is IT! I will do NO more talk of poop on this forum!!
Flirting ONLY!
Sheesh...
11-10-2008, 09:03 PM   #5
RHOV
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i think that belongs in the "crohn's pickup lines" thread...
11-10-2008, 11:30 PM   #6
katiesue1506
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HAHA!

I told it wasn't a thing to worry about! I get my next one this weekend. It's my week 2 infusion... so that makes me one week ahead of you. We can be Remicade buddies.

Drew is becoming more scandalous out in the open. I like it! MBH AND DREW SITTIN IN A TREE.
11-10-2008, 11:52 PM   #7
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Yay MBH!

Am sooooooooo glad everything went so well for you - even if you cant tell the difference between silver and grey elevator doors (I mean come on!) LOL

Me finks if you are like me on that front they could have been orange with purple dots and you STILL wouldnt have figured it out and neither would whoever you asked! Dont ya just love it? lol

Its a very strange feeling going for your first few infusions, watching the chamber drip, full of expection, mixed with apprehension etc etc.

I have been on remicade since May 07 and it took until the 3rd infusion for me to START feeling any difference. Gastro said it was because my gut was so inflammed so hang in there ok?

I have my next infusion in a weeks time and have managed to get down to 50mg pred yesterday (planned everything out with my GP yesterday), will finish my antibiotics before the weekend. So I am really hoping they let me have my infusion and that I am well enough! Have only so far had my infusion put back a week once before due to being too unwell. If you have infection they wont let you have it because it could make you sicker by dropping your immunity further and allowing the "bugs" to run riot.

That is the only thing that really bugs me about the infusion and its a tough call when you arent well and all you want is to get on with things. Make sure you look after yourself MBH!

Well done honey for coping yesterday! Thinking of you. Keep us posted on how you are doing and feeling. ((hugs))
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11-11-2008, 10:51 AM   #8
drew_wymore
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katiesue1506 said:
Drew is becoming more scandalous out in the open.
Every time I hear or read the word "scandalous" I always think of Tupac ...

http://www.azlyrics.com/lyrics/2pac/skandalouz.html
11-11-2008, 10:53 AM   #9
katiesue1506
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Didn't you know Tupac is still alive. He lives with Elvis and Biggie.
11-11-2008, 11:42 AM   #10
drew_wymore
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katiesue1506 said:
Didn't you know Tupac is still alive. He lives with Elvis and Biggie.
Biggie and Elvis are dead. I really honestly do believe 'Pac is alive.
11-11-2008, 04:18 PM   #11
RHOV
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nah, he was abducted by aliens.

just like elvis.
11-11-2008, 04:34 PM   #12
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MBH - I'm so glad it went well for you. I know it's a relief. Hope it works fast for you. Adorable child, by the way!!!

Lisa
11-12-2008, 11:17 PM   #13
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katiesue1506 said:
Drew is becoming more scandalous out in the open. I like it! MBH AND DREW SITTIN IN A TREE.
Thanks, Remi Buddy!
And thanks, Kromom for bringing back my HIJACKED thread!!

Okay - so day 2. I thought that Remi was working backwards - I had more trips to the toilet yesteraday than usual. I didn't count - but 8 or 10 is my guess. I'm like - WTF??? Then Kim told me that Benadryl makes her poop (sorry Kim for outting you on that one) so maybe it's that.

Then day 3 - more blood than I have EVER seen in a toilet. WTF again.
BUT, not a lot of going. LESS than usual - so good.
11-24-2008, 06:52 PM   #14
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Don't bother reading this - it's too long, it's more for myself than for you guys.

I can NOT even believe that people go into the hospital and leave with their lives! I swear they don't know what they are doing sometimes!

I had my second Remi infusion today. I was asked if I wanted a window view of the city or a TV (apparently you can't have both) I said the view would be fine, I was given the TV. (duh)
I WAS allowed to take a non-drowsy Claritin instead of a Benadryl, so at least I should be awake tonight. We'll see I get diarrhea this time. If not - I vote that it was the Benadryl. They did have to call my doc and ask if that was okay, I thought there would be a hospital doc that they could ask, luckily they reached him.
*** Helpful tip for Remi patients*** The nurse said that in the future I could take the Claritin and Tylenol ahead of time because once you take it, you just have to sit around for 1/2 an hour and wait for it to kick in. If you take it befor eyour appt, you can start the infusion sooner.
She also said that they give Benadryl instead of Claritin because Remi is so old, they didn't have Claritin back then. Bad reasoning I think, but whatever.
Three times I heard someone saying my name to the nurse and that I was waiting for her. The third time, someone said it, she was standing right next to me. I decided to wave this time. Hello - I am NOT in the waiting room waiting for the nurse, I've been in the chair for 1/2 hour. Makes me wonder who they think I am, and who is still in the waiting room!
Maybe they DON'T know who I am - cuz I don't have the wrist band on that SAYS who I am?? Once they realized that, the nurse who put it on just HAD to mention that I have a round number birthday coming up. Thanks a lot lady...
After my IV was in ,the nurse noticed that something was dripping right from the middle of the line onto the floor. "That's not right.", she said. No crap!
And for some reason it's freezing in there, and 3 different people offered me a blanket, but NO one ever brought one. I finally asked about 2 hours later cuz I thought my fingers might freeze off.
I had to go pee 3 times while I was there, only once hooked up to the line though, but I'm a foot flusher and the flush handle is like 5 feet off the ground. Can you picture that?? I'm glad I didn't pull something. I need to think of a new way to do that before my 70th birthday.
They only checked my BP twice while I was there. Last time it was every 15 minutes it seemed. I was there exactly 4 1/2 hours and they only checked it twice.
Then I noticed in my phone that my cheeks were bright red. I mean bright.
The nurse said that my vitals are fine and I felt fine so it's nothing to worry about. (Doesn't it mean SOMEthing though??)
I don't know - I count 10 little mistakes. Couldn't one mistake kill me??
Then if anything else couldn't piss me off, I lost my frikin parking garage ticket somewhere IN my car. Between starting it and getting to the booth.
Next infusion December 23rd. Merry frikin x-mas...

(Don't get me wrong, I am thankful for medication, insurance, leaving work early, my husband picking up the kids instead of me, the possibility of remission... yadda yadda...)
11-24-2008, 07:17 PM   #15
My Butt Hurts
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No, it wasn't bad at all - just when I started noticing strange things I decided to write them down. My memory is crap, so if I don't write it down I'll forget it. Hey - any day that I get to lounge on a chair for 4 hours without answering to anyone is okay by me.
11-24-2008, 07:20 PM   #16
jed
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My Butt Hurts said:
I was asked if I wanted a window view of the city or a TV (apparently you can't have both) I said the view would be fine, I was given the TV. (duh)

ha, this is gonna be a good day..................
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Current meds - Methotrexate, the rest werent doing anything.
Current state - hopeing poop softener, honey and cinnamon tea make me poop like a crohnie again..

my story - http://www.crohnsforum.com/showthread.php?t=3093
11-24-2008, 07:24 PM   #17
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What makes us have to pee so much while getting Remicade?!!! I swear I had to go 5 times - 3 while dragging the IV pole with me! Sorry you had a harder time on the second infusion. Hopefully your third will be better! My second infusion is on the 4th. Hope you see some good results soon.

Lisa
11-25-2008, 09:28 PM   #18
My Butt Hurts
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Well, I guess the saline makes you pee, kromom. It's a whole bunch of liquid going in you and it just begs to come out. Though how the heck would it get to your bladder? Well, I guess I didn't help you at all huh?

and I'll say what I always say in chat... JED!!!!
11-25-2008, 09:46 PM   #19
jed
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My Butt Hurts said:

and I'll say what I always say in chat... JED!!!!
i thought it was Pen that says that to me, you encourage me to keep going
11-26-2008, 12:37 AM   #20
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glad your infusions are going ok MBH!

im so amazed that you can like, report everything that happend lmao!
the benadryl COMPLETELY knocked me out every time so i usually had no idea what had occured in the last 3 hours
but, being unconscious and all, then i didnt have to go potty either hahah
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