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First Remicade in 2 days. Nervous and have a few ????

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Ulcerative Colitis
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Posted 6/20/2012 12:57 AM (GMT 0)
First thing I want to know is, how fast they can get me to a bathroom during an infusion?  Do they prepare for that?  As you all know, when we have to go..we have to go now!  If I'm all hooked up how do they handle that?

Second, I keep reading about tiredness afterwards.  Does this mean sleepy tired, or just worn out tired?

Any nausea? 

I am always nervous of the unknown, and any tidbits you can throw my way would be helpful.

Also my doc is telling me I may see improvement in 14 days?  Is that reasonable?  I wish he wouldnt have told me that as to get my hopes up for nothing.

Thanks for your patience.

 

Posted 6/20/2012 1:12 AM (GMT 0)
Hi! I've been on remicade since November.

Bathroom....there is a bathroom right outside of the infusion room in my GI's office. There is a nurse in the room w/ us the entire time. If anyone has to go to the bathroom we let her know. She unhooks us, we potty and then hooks us back up.

I am usually tired the day of the infusion. I get benadryl along w/ the remicade. That usually makes me groggy. I am able to do my normal activities the rest of the day. But usually a little extra sleepy for about 2-3 days after the infusion. But not so tired I'm stuck home in bed.

I have never have nausea w/ remicade.

Hope this helps!
Posted 6/20/2012 1:18 AM (GMT 0)
Getting to the bathroom should be easy, unplug the machine from power and go.
I am usually not tired after the infusion.
No nausea.

I noticed improvement everyday, I was in a real bad way at the time I started treatments though.

As far as helpful tidbits, let them know if you start feeling strange at all (hot, swelling, hard to breath), it may just mean they need to slow the infusion down or you may just need some Benydrl* or something to help with the reaction.
Posted 6/20/2012 2:39 AM (GMT 0)
I was nervous and anxious riddled for my first infusion, by the second it was a breeze. The third I fell asleep. uc logic is right. You just unplug the machine and go.

I don't personally feel Remicade is the monster we tend to make it out to be. It's the only thing I think that's really helped me.
Posted 6/20/2012 2:52 AM (GMT 0)
I was extremely nervous when I had my first infusion! But now I look forward to it! :) I have mine at my local hospital on the oncology ward. I am in a regular hospital room where there is a bathroom and when I have to go, I unplug the machine and wheel it with me into the bathroom.

I find it very relaxing to be honest. They give me Benedryl (and Iv Solumedrol) so I tend to get a bit sleepy but I find myself usually on the laptop, playing games, cruising the internet etc. Mine usually last about 4 hours from start to finish - registration, hook up, medication.

After my first infusion, I had A LOT of pings and pains in my gut. But it wasn't unbearable. And that lasted maybe a day or so. I also tend to get headaches and muscle cramps the day of the infusion. The day after, I feel great albeit a bit tired. But after the first, I would say ehhh....that maybe it wasn't until after my 3rd infusion where I felt like - Hey this might work!

I just had my 7th last Wednesday and I had almost very little side effects. I still had some mild muscle cramps and slight nausea but it only lasted a couple of hours. I have been in remission since my 3 or 4 infusion. It has been awesome! :)

In the beginning, you might get the stomach pain (the pings of pain I was referring to), some fatigue, headaches, nausea and muscle cramps. But once your body gets used to it, those should subside or become a one day nuisance. Hopefully! :)
Posted 6/20/2012 3:28 AM (GMT 0)
I have been on Remicade for 2 years and 4 months now. My first few infusions, I had to take benedryl, so I couldn't drive myself, and I was tired after. Since then, I haven't had issues with the infusions. Once in a while I will feel a little run down for a couple days afterwards, but most of the time, I feel totally normal after.

When I started, pred had gotten me down to 7-10 bloody BMs/day. ITA about the bathroom-just unplug and go with everything. I worried about that too. Some people respond really quickly-I was a little slower. I had been on humira previously, and that was overnight. But Remicade took longer to be effective for me, I felt a little better after my first infusion, a little better than that after the second, etc. But it wasn't until the 4th infusion that i really reached remission. That said, I have been in a great remission since then, and have now gone longer on Remicade than I did on humira. So it may not be immediate-but things should start to improve.

Do tell them if you have any issues. Like others have said, you may need to slow down the infusion or take other meds during. I was in with a man this past week who has issues with the infusions. It works really well for him, so he does it, but he has to take steroids for days before as well as during, plus benedryl and demeral (sp?) during infusions, and he still reacted. But he said his life before was worthless, so this is worth it.

I actually enjoy going. It is a nice reprieve from my hectic life. And I have a great quality of life now. It is worth it for me.

Good luck!
Posted 6/20/2012 2:25 PM (GMT 0)

Joylu said...
First thing I want to know is, how fast they can get me to a bathroom during an infusion? Do they prepare for that? As you all know, when we have to go..we have to go now! If I'm all hooked up how do they handle that?
Second, I keep reading about tiredness afterwards. Does this mean sleepy tired, or just worn out tired?

Any nausea?

I am always nervous of the unknown, and any tidbits you can throw my way would be helpful.

Also my doc is telling me I may see improvement in 14 days? Is that reasonable? I wish he wouldnt have told me that as to get my hopes up for nothing.



Thanks for your patience.

I was worried about the bathroom situation too but the bathroom was litterally right outside the door. And a nurse will be in the room with you the entire time...especially at your first infusion.

Do not be discouraged if you do not see an improvement that quickly. I was told it could take up to 4 or 5 infusions. If no improvement happens after that, then its time to worry. Good luck!
Posted 6/20/2012 3:50 PM (GMT 0)
Thank you all..
Posted 6/20/2012 3:53 PM (GMT 0)
the bathroom situation is no biggie. you just take the IV thing with you. i used to go pee twice sometimes during my infusions because the saline just goes straight through me.

also, i saw improvement after my first infusion. even though i was very tired and had TERRIBLE headaches, my UC eased up a lot while on remicade.
Posted 6/20/2012 5:21 PM (GMT 0)
I just got my first infusion (since 8 years ago) on Friday and like everyone is saying, the bathroom thing is easy to manage. I had an IV pole on wheels, so I could just drag it with me to the bathroom, which was only about 20 steps away.

I was a little tired the next day, but am already seeing improvement. There was no drama involved in getting the infusion at all, I bet everything will go smoothly for you.
Posted 6/21/2012 12:38 AM (GMT 0)
I felt a little tired after my first 2 infusions- like I had had a long, stressful day at work. I had a Benedryl pre-treat before my 3rd infusion and that almost knocked me out.

No nausea for me just general itchiness (hence the Benedryl).
Posted 6/21/2012 5:56 AM (GMT 0)
Joylu how was it today.
Keep us posted.
Im researching it myself because it could be my next step.
im a few hours ahead so i think this is the right day.
Ju
Posted 6/22/2012 2:13 AM (GMT 0)
Everything went fine. I slept a bit, read a bit, and since I left there I feel great. Actually ate a steak dinner which I haven't done in months.
Lets see how I feel tomorrow. I took a Lomotil so I could go without much worry, and somethims that plays havoc on me the next day.
Let you know. :)
Posted 6/22/2012 12:50 PM (GMT 0)
I will be crossing my fingers for you. I call Remi my magic juice because usually I start getting Uc symptoms again around the 7 week mark (I go in every 8 weeks) and as soon as I get the infusion - poof! I'm back to normal.

So hopefully this magic juice works as well for you as it did me :)

But remember, that it might take a few infusions before you notice a marked difference.

When do you go in for your second loading dose?
Posted 6/22/2012 1:22 PM (GMT 0)
My next one is 08/09/12
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