1st remicade infusion

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mtgman
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Date Joined Mar 2005
Total Posts : 1289
   Posted 4/6/2010 10:22 PM (GMT -7)   
ok so i had my 1st infusion yesterday.  got to the hospital at 12:30 to sign in (took 3 minutes) and then waited with my wife for 1/2 an hour.  finally went into the infusion center and got settled.  gave me bendryl and tylenol and then had to sit for another 1/2 a hour.  started the infusion- i was pretty nervous about reactions but nothing...i started to feel a bit "weird" when they upped the drip but i don't know if it was the benedryl or the infusion...nothing major though.  2.5 hours later we were out of there.  i was a bit tired for the rest of the evening and today i have been wiped out!  not sure if that's normal for the day after an infusion but i didn't even want to stand up.  put on the happy face at work but all i wanted to do was go home and lay down.  feeling much better tonight.  next one is in 2 weeks...can't wait to start feeling like a normal person again!!!!!!!  :)
35 year old male living in AZ.  Diagnosed with Crohns at age of 15.
Currently tapering prednisone (15 mgs) and I've been on 6_MP for 2 months.
In the middle of a bad flare now for 6 months...lost almost 30 lbs.


pimfram
Veteran Member


Date Joined May 2009
Total Posts : 506
   Posted 4/6/2010 10:35 PM (GMT -7)   
I think most of us get the wiped out feeling, too. Hopefully Remicade will be your ticket to a nice long remission.
Diagnosed with CD July 2007
Currently on Remicade, Imuran, probiotics, folic acid, multivitamin.
Resection December 2009

Amor fati - Nietzsche


randynoguts
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Date Joined Jan 2003
Total Posts : 6050
   Posted 4/7/2010 1:26 AM (GMT -7)   
hope it works for ya..
randynoguts 



     http://www.geocities.com/randynogutsweb/


chroniemomx2
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Date Joined Apr 2005
Total Posts : 2346
   Posted 4/7/2010 5:38 AM (GMT -7)   
Good to hear!  Ask if you can take your premeds at home.  I do that so I don't have to sit there for a half hour.

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 4/7/2010 6:18 AM (GMT -7)   
I sure hope the Remicade does the trick for you and you get feeling better soon.  Hugs!

Gail*Nanners* Co-Moderator for Crohns Disease & Anxiety/Panic
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

orngie
Regular Member


Date Joined Feb 2009
Total Posts : 161
   Posted 4/7/2010 10:06 AM (GMT -7)   
I started Remicade almost a year ago and that sounds like how all of my infusions go. The IV Benadryl makes me sleepy almost instantly, but I'm not going anywhere for a couple of hours so I just settle in for a nap.

I try to take the whole day off from work and sleep sleep sleep. It's weird how I can sleep most of the day, get up for a couple of hours to eat supper and watch some tv, then sleep all night. One the couple of occasions where I was unable to get a lot of rest it seemed like the Remicade didn't "take" quite as well and I would be more prone to problems between infusions.

What A Life
Regular Member


Date Joined Mar 2010
Total Posts : 116
   Posted 4/7/2010 11:27 AM (GMT -7)   
'The IV Benadryl used to put me out right away. If I took that, I wouldn't go back to work afterwards. However; I got used to the infusions and never had a reaction, so I just stopped taking the benadryl all together. I would find myself still calling off work as I told myself: "If there's one good thing I can get out of Crohns, it's a day off every couple of weeks for my infusion." :-) Good luck to you!
28 Y/O Male DXed Crohns in 2000.
Fistulotomy/Fistulectomy 2001
Been on many meds including Remicade.
Asacol and Pentasa on a when-needed basis as of recent
Current regimen: Diet and Exercise.


farfrmnormal
Regular Member


Date Joined Oct 2009
Total Posts : 117
   Posted 4/7/2010 12:04 PM (GMT -7)   
I've never had pre meds with my infusion and I feel a little tired during the infusion because I'm sitting there doing nothing but I'm ready to get back to work right after the infusion.
Do you have to have the pre meds before?

I've had 4 infusions and not had any side effects. It has definitely helped me get my life back. I went from upwards of 30 BM's a day, cramping and major fistula issues to maybe 2 BM's a day with very little pain.
- Diagnosed Nov 08' but undiagnosed for 13 years prior with no major problems
- First major flare Aug-Sep 09 - I attribute it to intolerance to meds and crappy GI
- Perianal abscess - EUA with drainage and Seton put in
- Meds: Remicade for life


tsitodawg
Veteran Member


Date Joined Sep 2006
Total Posts : 845
   Posted 4/7/2010 12:12 PM (GMT -7)   
When I started my monthly Remicade infusions 6 years ago I never had to premedicate, but I wish that I would have now. The premedicating with benedryl and with cortisteroids really make my down time a lot better. It used to put me down for 5 days after each infusion but now with premedicating I am usually down a day or 2 after at most. From the description of what you said in your post it sounds like you had a pretty normal infusion. One thing that may help you is to have it done on a full stomach and to bring a blanket with you. They always give me a blanket or 2 out of the warmer also but I like to keep my own just in case. I always get cold during the infusion because it is at room temperature. I also try to sip on a coke(I know it is bad for me) because the cold syrup helps with nausea and I love coke.

*Phoebe*
Veteran Member


Date Joined Sep 2005
Total Posts : 769
   Posted 4/7/2010 7:50 PM (GMT -7)   
It's interesting that everyone, or at least most people here, seem to have pre-meds as the norm. I've never had pre-meds, it makes me infusion go faster and means I am not sleepy at all afterwards.

I wonder why the US uses pre-meds as the norm but they don't over here?

I hope Remicade works for you! It is my wonder drug, I started feeling better within a couple of days (I had an abscess which had had surgery and needed healing and it started healing so quickly it was almost scary!) - I hope you have the same positive experience. :)

What A Life
Regular Member


Date Joined Mar 2010
Total Posts : 116
   Posted 4/7/2010 8:04 PM (GMT -7)   
Pre meds for me were not the norm... They actually just asked me if I wanted them over time.. I normally said no because I brought books with me. However, if I felt a little tired; I would premed so I'd be knocked out in a couple of minutes.. That benadryl through the IV really put me out!
28 Y/O Male DXed Crohns in 2000.
Fistulotomy/Fistulectomy 2001
Been on many meds including Remicade.
Asacol and Pentasa on a when-needed basis as of recent
Current regimen: Diet and Exercise.


mtgman
Veteran Member


Date Joined Mar 2005
Total Posts : 1289
   Posted 4/7/2010 10:17 PM (GMT -7)   
thanks all!!! i'm keeping my fingers crossed! they said i could take the benadryl and tylenol before i get there to save time which is of course what i'll do from now on. one thing that was pretty cool...i am doing the infusions at a cancer center at the hospital and while i was there 8 or 9 people were in and out for their chemo and other treatments and EVERY single person was so nice and had a smile on their face...i can't even imagine their battles...yet they were so positive and friendly!
35 year old male living in AZ.  Diagnosed with Crohns at age of 15.
Currently tapering prednisone (15 mgs) and I've been on 6_MP for 2 months.
In the middle of a bad flare now for 6 months...lost almost 30 lbs.


tsitodawg
Veteran Member


Date Joined Sep 2006
Total Posts : 845
   Posted 4/7/2010 10:52 PM (GMT -7)   
I also do mine at an infusion center at my local hospital and know what you mean about the incredible cancer patients. As for the benadryl, I have mine in the I.V. and it used to make me really tired but now after so long I just get really relaxed. One other thing that I have learned to help is to premedicate with zofran. I usually take it a few minutes before or during the infusion to help with the post infusion nausea. Just make sure that you tell the nurses of any medications that you take ahead of time.
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