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Just got my first remicade infusion..

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Ulcerative Colitis
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Posted 7/4/2015 8:29 PM (GMT 0)
It went fine, mild headache in the eyes but that's about it, little tired but hard to tell if that is remicade related, I will be updating you guys on how it seems to be working for me, I'll start by listing my symptoms at the moment which are bloody liquidy substance with abdominal pain, constipation and diarrhea when I can complete a movement.
I have a question though, the nurse said it was 375mg of a dosage, I've read that people receive 3-5mg. This is a huge difference so I was wondering if this makes sense or not.
Posted 7/4/2015 8:40 PM (GMT 0)
Great, keep us updated. There are a few of us here who have just started on it, too. Dosage is based on body weight. 5mg/kg. So you must weigh about 75kg (165lbs).
Posted 7/4/2015 11:18 PM (GMT 0)
Ki-wi is correct. The nurse was giving you the total dose, not the per kilogram dose, just divide. Tiredness and headache are common infusion reactions. Did you premeditate eith Tylenol and an antihistamine? As those help avoid it.
Posted 7/5/2015 12:05 AM (GMT 0)
They didn't give me anything before the medication, It ended up giving me a migraine headache which went away with a couple tylenol. Right now I feel very weak and fatigued, almost like I wanna faint, but I also haven't been eating anything lately because of my loss of appetite. And thanks for clearing that up for me btw!
Posted 7/5/2015 3:21 AM (GMT 0)
5mg/kg is not the only dosage
i am on 10mg/kg and im sure people are on others
i think that headaches are somewhat common but that sure as heck a whole lot better than being in a UC flare
Posted 7/5/2015 4:02 AM (GMT 0)
They start at 5mg and depending on response they can increase the dose and the frequency. I'm fairly sure 10mg is the max
Posted 7/5/2015 11:14 AM (GMT 0)
about 40-30 minutes before your next infusion, take an antihistamine (claritin or benadryl) and a Tylenol and they should avoid those symptoms the next time. It's standard procedure, so I'm surprised the infusion center didn't give them to you, or ask you to take them before arriving. Oh well, you know for the next :-)
Posted 7/5/2015 11:46 AM (GMT 0)
Good to see another remicade newbie. (I just had my first infusion a week ago.) It took a few days but my symptoms have been GREATLY reduced. Not in remission but feel like I am getting there.

And I had no clue that is why they gave me Tylenol. I didn't experience a headache and maybe that is why? Yes to fatigue but I can't necessarily blame that on the drug.

Have you got your appetite back? I found that was one of the first things I noticed after a few days. Suddenly, I wanted food. It was a good feeling. Keep us updated on how you are doing.
Posted 7/5/2015 12:56 PM (GMT 0)
UPDATE: The next morning..

Had my remicade infusion finish around 4:15pm yesterday. right now it's 9am the next day. Haven't noticed any improvement yet. Last night I went to bed around midnight and woke up almost every 1-2hrs with night sweats some cramping and urgency to use the bathroom each time. Still just the leaky bowel stuff and constipation when I go though. Still no appetite either, hoping later today or tomorrow I start to notice a difference.
Posted 7/5/2015 1:55 PM (GMT 0)
Try to be patient, it can take time for some to respond to the Remicade. It's not uncommon for it to require 2-3 infusions, and some have needed up to five before seeing any change.
Posted 7/6/2015 12:44 PM (GMT 0)
UPDATE: Day #2

Still no noticeable improvements except maybe that I'm more constipated now then before the remicade. Went to bed at midnight again and woke up every 1-2 hours with urgency but nothing except constipation and tiny bit of liquid. Before remicade this was happening as well, only difference is that before I was able to release some diarrhea time to time with the constipation, now I'm plugged up solid it seems, not a good feeling especially since I still get the cramping with the urgency.
Posted 7/6/2015 4:14 PM (GMT 0)
15mg/kg is the highest - there are three levels :)
Posted 7/6/2015 4:44 PM (GMT 0)
I got a bit constipated after one of my infusions
I was having tons of Ds by the first two and I don't think they slowed down too much after it
By the time I got to the third infusion my poops were more formed and I got constipated
But it went away after a few days
Posted 7/6/2015 6:05 PM (GMT 0)

blonde0724 said...
15mg/kg is the highest - there are three levels :)

I've never heard this, is that a uc dose? I have heard of 7.5 mgs per kilogram though....
Posted 7/6/2015 8:15 PM (GMT 0)
You-See: Try not to be discouraged if you don't see daily improvement. It can take a while, particularly if your disease is widespread. Try to think in weeks and months rather than days and hours.
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