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First remicade infusion

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Ulcerative Colitis
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Posted 8/17/2012 10:53 PM (GMT 0)
Well I had my first Remicade infusion 2 days ago and haven't noticed any changes yet. I'm remaining hopeful that it can slow things down a bit from the 10-15 bm's I'm currently having. Definitely not
expecting a miracle but some relief from this flare up would be nice!

The infusion went well, I received tylenol and benadryl for pre-meds which made me tired immediately. I was extremely tired the rest of the day but that was about it. I didn't have an allergic reaction and no noticeable side effects yet. The only thing I noticed was that my hands and feet were cold during the infusion, next time I'll wear socks and maybe mittens lol.
Posted 8/17/2012 11:42 PM (GMT 0)
Are you doing the loading doses?

Did they have warm blankets there? I always get cold and my infusion nurse has lots of blankets! The infusion makes me super sleepy too.
Posted 8/18/2012 12:05 AM (GMT 0)
No, I didn't have a loading dose. I was given the dosage of 5 mg per kg of weight. I'll ask about blankets next time for sure!
Posted 8/18/2012 12:23 AM (GMT 0)
the first 3 are considered loading doses since they are close together and they want to monitor you closely.

i hope it helps you though! my first infusion helped me a lot but i know it can take some people 5-6 infusions to work.
Posted 8/18/2012 1:06 AM (GMT 0)
Oh I see, I thought a loading dose was an initial higher dose then the dosage is lowered after that. I understand now, thanks bananagirl :-)

So yes, I am doing the loading doses. I have my next infusion on the 29th.
Posted 8/18/2012 11:15 PM (GMT 0)
Getting cold limbs is very common for any IV. You're getting room temp (~74F) fluid entering your 97.8F degree blood. It's probably why they always give everyone a blanket.
Posted 8/19/2012 2:16 PM (GMT 0)
     Wishing you the best of luck for success on Remicade.  After my first dose I felt like a million bucks, but, I was also on prednisone rolleyes .  At my third dose, I was off the prednisone.  My symptoms returned and my doctor said I had already built up antibodies to the Remicade.  I did try a fourth dose, hoping and praying it would work, but no go.  I gave Humira a shot for three months too, but that failed.  I think Remicade is the big daddy of the biologics, so my nurse didn't think Humira would work if Remicade failed.  Oh well, that's just me.  Lots of people doing great on it. 
Posted 8/19/2012 4:39 PM (GMT 0)
It can take up to 4 or 5 doses to see an improvement. Some people go into total remission while others will have a marked improvement but not total remission. Good luck with it.
Posted 8/19/2012 7:32 PM (GMT 0)
     This disease sure is whacky shocked
Posted 8/20/2012 10:43 AM (GMT 0)
I just had my first Remicade dose this week as well. It made me incredibly sleepy - almost comatose I just could not keep my eyes open. I napped off and on the rest of the day.

I'm still in the hospital (day 12) and am not sure yet what the plans are for me when I leave here, meaning I don't know when I'll get my next infusion.

I hope it's a miracle drug for us both!
Posted 8/20/2012 12:34 PM (GMT 0)
I didn't actually notice a marked improvement until after my 3rd or 4 dose.

Good luck, I hope the Remi helps you like it has me! :)
Posted 8/20/2012 12:41 PM (GMT 0)
Here's a hint: I take an antihistamine (Zyrtec) at home. It doesn't make me sleepy, and then they never gave me benadryl because I'd already had an antihistamine. I now take both my Zyrtec and my tylenol before I go.

I've been in remission since about my third dose, at first it was a major improvement but not complete remission. I actually improved slowly over the first year, as my colon healed and became less reactive and my energy returned.
Posted 8/20/2012 2:53 PM (GMT 0)
Thanks everyone for your replies. It's nice to hear how other people made out, whether it worked or not. I'll just be patient and see how things go.

@OhCr@p! - I hope it works for you! 12 days in the hospital, that's awful! I was in for 9 days last year and I know it's not fun. Really hope you get better soon.

@Judy2 - thanks for the hint! I'll try that next time :-)
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