what are your experiences with side effects after your remicade infusion? (established users please)

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Regular Member

Date Joined Oct 2007
Total Posts : 241
   Posted 4/2/2008 1:26 PM (GMT -7)   
I am interested in learning what some of the members experience after the infusions. Do you have anything right away, or does it start later in the week? wjat are the side effects that you have, and how do you deal with them? Does anyone feel wonderful the day of and the day after remicade, and then go back to a less wonderful baseline?

New Member

Date Joined Mar 2008
Total Posts : 9
   Posted 4/2/2008 1:38 PM (GMT -7)   
I get dizzy and a headache directly following a treatment.  If I sleep for a bit it goes away and I feel good.  The next day I feel really good and I feel good for a couple of weeks before it starts getting bad again.

Regular Member

Date Joined Sep 2007
Total Posts : 98
   Posted 4/2/2008 2:08 PM (GMT -7)   
I usually get REALLY tired after my infusion but after I sleep it off I feel comepletely fine!

Regular Member

Date Joined Oct 2007
Total Posts : 241
   Posted 4/2/2008 2:24 PM (GMT -7)   
anyone started to have joint pain, fever of less than 100 and sweats: 4 days after? I felt wonderful on the day of, and the day following my tx. This may just be random other stuff. I ususally feel a little tired, or like i have a uti for a day or so, but this is different. i have only been getting this for about 7 tx. I feel better today than yesterday. but am sweating like a pig (sorry)

Veteran Member

Date Joined Apr 2006
Total Posts : 733
   Posted 4/2/2008 2:31 PM (GMT -7)   
Well I used to take it and only feel tired afterwards and have constipation and no other problems, then they raised the dose cause I was still having bloody stool... then I got similar side effects to what you're saying and the doctors told me it wasn't from the Remicade because it was too long after the infusion to be a reaction... I don't think that the doctors are well informed about the side effects of Remicade since these 2 doctors prescribed it to a lot of people yet they made me think I was crazy.  The side effects I started having were bladder/pelvic pain (I took 5 urine tests all negative and even got a Laparoscopy to check for Endometriosis the pain was so bad), I had joint pain in my hands, knees and eventually almost everywhere, severe charley horse cramps in my calves, neck pain so bad I couldnt move...  The reaction seemed to start about 7 days after the infusion for me.  Now I am off Remicade since December 2007 and I have none of those problems, but I am having a bad flare-up of my UC, very bad flare-up.  But I can't go through that pain again from the Remicade.  I was told I could try it again by taking Prednisone the week of the infusion.  I never got the antibody test but I think you should get it.  It sounds like you may have antibodies against the Remicade. 

Diagnosed with Left-sided UC in 1995 at age 15, Prednisone, Rowasa & Hydrocort. Enemas, Proctofoam, Sulfasalazine, Asacol, Probiotics, Fish Oil, Aloe Juice, Canasa, Enotcort, Colazol, Anamantle, Remicade, etc... had almost recto-vaginal fistula in 2004, put on Remicade, August 2007:Increased Remicade dosage-700mg every 6 weeks,diagnosed w/ Psoriatic Arthritis & Fibromyalgia Current meds: Clorazepate, Proctofoam HC, Glucosamine 500, Vitamin B, Lomotil,  Tylenol pm, Lyrica started 1/17/08

Post Edited (princesscolon) : 4/2/2008 3:40:17 PM (GMT-6)

Regular Member

Date Joined Feb 2007
Total Posts : 33
   Posted 4/2/2008 2:43 PM (GMT -7)   
My last two infusions I have had severe joint pain that started exactly 2 weeks after
each infusion.
I met with my GI this morning and he said I am having a delayed reaction to the Remicade.
He wants me to take 20mg of predisnone the day before, and another 20mg on the day
of my next infusion, then 6 days of Medrol after.
The Dr also said that after 3 infusions of doing the above, I should no longer have any more
delayed reactions.
The Remicade has done wonders for my Crohn's, (closed a fistula, normal bowel movements) so I will give it a shot.

58 yr old female
Dx with Crohn's-Colitis January 2007
Meds: Remicade, Aciphex

It's in the bag
Regular Member

Date Joined Aug 2007
Total Posts : 122
   Posted 4/2/2008 3:06 PM (GMT -7)   
I've been doing it since August and so far have had on real side effects except maybe getting tired during. Typically afterwards I go straight to the gym and lift weights .
Asacol 400mg x 8 dly , 50 mg Mercaptapurine x 1 dly , 40 mg Omeprazole x1 dly , Remicade every 2 months , Multivitamin , Fish Oil ,

Veteran Member

Date Joined Apr 2006
Total Posts : 686
   Posted 4/2/2008 4:27 PM (GMT -7)   
I used to get really tired after the infusion but not anymore. I've been on the cade for a little over a year.

Remicade and 6MP

Regular Member

Date Joined Nov 2007
Total Posts : 146
   Posted 4/2/2008 4:33 PM (GMT -7)   
I just had an infusion yesterday, the infusion went as well as expected. I have a long drive to the infusion site so my wife drove us home, I was sleepy so I went to lay down about six pm. I woke this morning 1:30 pm so I slept a long time, I feel weak, but yes the remicaid helps me I feel like my whole body has become relaxed like it is saying ahhhhhhhhhhhhh. my swollen abdomen is gone and the bleeding from my bottom has also stopped. Yes I do get bad headaches today and for a few days, but I think it's a small price to pay for releif, that my experiance.

Regular Member

Date Joined Jan 2008
Total Posts : 95
   Posted 4/2/2008 4:36 PM (GMT -7)   
I would get very tired and just not well feeling the first 4 days, cramps, no appetite. Then I would feel some better until around 2wks before the next infusion.

Regular Member

Date Joined Nov 2005
Total Posts : 30
   Posted 4/3/2008 7:55 PM (GMT -7)   
I have been getting Remicade infusions since 8/05.  I get them every 6 weeks.  I am tired after my infusion, but I attribute most of it to the Benadryl I am premedicated with.  I often suffer from night sweats, aches and pains, and sometimes fevers a couple weeks before I get it, which I believe to be Crohn's trying to flare up. 

34 yo, Diagnosed 6/2005.  Ileocolic resection.  Tried Asacol, Pentasa, & Imuran.  Crohn's fistulized, used Cipro & Flagyl (w/side effect of neuropathy).  Started Remicade 8/2005 & doing much better.  Upped to every 6 weeks due to breakthrough symptoms at 7 weeks.  Possible flareup from flu shot 11/06.  Occasional gallbladder issues. 

Veteran Member

Date Joined Sep 2006
Total Posts : 845
   Posted 4/4/2008 8:24 AM (GMT -7)   
I have been receiving the max dose of Remicade infusions every month for the past 3 plus years.  The day of my infusion, I too am also a little tired due to the premeds.(benedryl) Usually for the next 2-4 days after each infusion I have a lot of fatigue and flu like symptoms.  This got better as time went on, until I started to develop antibodies.  I also began to get puffy skin and swollen hands after each infusion.  As of last month, I now have to stop the infusions due to it only being effective for 1 weeks now.  Good lick with the Remicade, it was a lifesaver for me for a long time.

Veteran Member

Date Joined Feb 2007
Total Posts : 734
   Posted 4/4/2008 8:59 AM (GMT -7)   
It took a while with adjusting doses etc... for it even to work. When it did, it was great. I used to sleep it off and have a bit of a sore throat. Other than that fine. After several years, I started to get a flushed face during infusion and Remicade finally recently quit working. Now I am forced to try Humira. I can only pray it worked as well as Humira did for me. Good luck!

Veteran Member

Date Joined Aug 2007
Total Posts : 1202
   Posted 4/4/2008 9:02 AM (GMT -7)   
When I was on Remicade I did not have any side effects, except getting better. I felt fine during my infusion and after. I did, however, request a different antihistamine over Benadryl. Benadryl makes me sleepy, so I would take Allegra (or Zirtec) instead.
--39 year old female, dx as UC in '04 (1st symptoms in '03), switched to Crohn's in '05, 1 fistula, crohn's colitis, limited to large intestine
--rejected (reaction/didn't work): Asacol, AZA, 6-MP, MTX, Remicade, Humira, prednisone
--stuck on methylprednisolone, tried Prochymal in Phase III study (can't wait til it's approved!)
--started Tysabri 3/21/08
--single mom to 10-year-old girl

Regular Member

Date Joined Jun 2006
Total Posts : 289
   Posted 4/4/2008 9:51 AM (GMT -7)   
The side effect that I'd feel is being very tired afterwards. I'd typically take a nap that afternoon, then feel better. During this winter, I've had a lot of colds (or maybe just one long, prolonged cold). I've thought that may be a result of lowered resistance to infection, but blood work has always come back OK. The main thing for me is that the Remi helped alleviate my CD symptoms.
Current Medications:

Pentssa, 1000 mg qid
Vitamin B Complex
Trader Joe's Probiotic
Folic Acid
Remicade infusion; every 8 weeks
Ambien, PRN
Seasilver Whole Food Liquid Nutrition

Julia Hill
Veteran Member

Date Joined Mar 2008
Total Posts : 560
   Posted 4/4/2008 10:27 AM (GMT -7)   

I have had 14 remicade infusions. 2 hours before each infusion I took 50mg of pred and benadryl. I never had any problems at all until the last 2 infusions. Exactly 6 weeks after the infusion I developed severe joint pain which was later diagnosed as remicade induced lupus. I felt good until the lupus struck. Now I will try Humira, as it as been 1 year since I discontinued remicade and I am now having problems with my crohns. All the best to you, and keep us posted.
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