remicade side effects

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caras
Regular Member


Date Joined Apr 2006
Total Posts : 59
   Posted 10/27/2007 11:56 PM (GMT -7)   
hi guys
so i had my first remicade infusion since march 2006 (when i had a ressection and then over a year long remission)
anyways. i've had a very sudden massive flare this past month with peri-anal abscesses and fistulas and all that
pleasant stuff. i litterally woke up one morningand my bum hurt.
anyways
i had my first remicade infusion on tuesday and today and yesterday my body has been aching and im just feeling like crap. i guess i feel almost flu-like and hardly want to get out of bed.
i dont remember having any major symptoms the last time i was on remicade, but they could have been blinded by the fact that my crohn's was healing after such a long battle.
any input would help.
just generaly having a rough time right now.
its hard to think that i could have been doing so well for over a year and then one day it all can change.
i keep thinking that noone around me can understand.
but i know you all can,
thanks again
cara

caras
Regular Member


Date Joined Apr 2006
Total Posts : 59
   Posted 10/27/2007 11:59 PM (GMT -7)   
oh also,
everytime i leave the house to get out and try to get my energy back up i get reallly sweaty. particularily my face. im talking dripping wet.
the rest of my body is either super warm or freezing, but my face is always sweating. this is not something i've experienced before.
im on antibiotics and dont have a fever.
thoughts?

teddybearweiser
Veteran Member


Date Joined Oct 2004
Total Posts : 3042
   Posted 10/28/2007 3:27 AM (GMT -7)   
Hi did your doctor give you any meds before restarted the Remicade. You may have built anti-bodys
to Remicade. I would talk to your doctor about Humira. Once you stop Remicade its hard to restart
because of anti-body you build up.
Hi, I am teddybearweiser, I am a male.
I was diagnosed with crohns disease when i was admitted to the hospital
in 1992, in Jan of 1993 I was back in the hospital for surgery for my crohns. I had part of my right colon resectioned with ilecolonstomy.
 My GI doctor has me on Asacol, Dicyclomine,Imuran,Celebrex and Remicade. B-12 injection once a month.
My Internest doctor has me on Lisnopril-HTCZ and Folic Acid. Diagnosed
with Osteoarthritis July 2007
 


gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 10/28/2007 6:30 AM (GMT -7)   
Have you called your GI's office to disgust this and are you on pred. ? I did get some body pain issues and sweating but I had that before the Rem. I know how you feel about one day things seem to change things but you"ll get going back to better health. Keep your good spirits up and get rest and liquids. Keep in touch. I had a bout with a cold that threw me for a loop but am coming around now. lol gail

JudyK89
Veteran Member


Date Joined Dec 2006
Total Posts : 1986
   Posted 10/28/2007 8:32 AM (GMT -7)   
This is a classic delayed reaction to the Remicade. Since you've been on it before, your body built antibodies to it. Please tell your doctor right away. Hopefully they can give you meds to help these symptoms, but you may have to stop taking the drug depending on how high your antibodies are.
Judy
49 years old, Crohn's Disease   
Six resection surgeries, permanent ostomy, adverse reactions to Remicadeback on 6MP for maintenance, hoping for a long remission from this last surgery. 
 
 


turtle21850
New Member


Date Joined Oct 2007
Total Posts : 2
   Posted 10/28/2007 10:42 AM (GMT -7)   
 I totally understand your feeling of no one understanding!!!!!!!!  My crohn's has never been fully in remission, and with 2 small kids and full time job, it's stressful.  People don't understand why your so tired, pale, sluggish, and at times moody.  I just look at my kids and tell myself they need me and I'm complaining but atleast with all of my health problems--god has made it possible for me to have two bueatiful and healthy girls.  Try to stay positive and when you hate the world because you feel noone understands--Just think we are not alone!!!!!!!!!!  Take care!

bunnypucker
Regular Member


Date Joined Dec 2003
Total Posts : 494
   Posted 10/28/2007 5:23 PM (GMT -7)   

i get the same exact symptoms everytime i take cade, as well as just a weird buzzy feeling in my body. i have always gotten this feeling since my first infusion and the buzzy feeling last a few hours but the flu like symptoms about 3 days or so. so, youre not alone but definitely tlak to your doc about it. he just decided that its the way my body reacts to it and we dont worry becasue it doesnt get really bad.

 

bunny


Crohn's Disease Diagnosed 12/24/03 (Thats Right, Merry Christmas to me!)
Bipolar
Probable MS
 
Im 26 years old, and am currently only taking remicade, protonix and evil prednisone for my CD. am on quite the cocktail for my BP however: Geodon, Lamictal, Celexa, Buspar and Klonopin.
Im also on lipitor for high cholesterol caused by a prior BP med. im on fentanyl patches for pain also, and i take some meds prn for my allergies, asthma, and migrianes.
 
"We are all worms but I do believe i am a Gloworm"
^always makes me smile^
 
 
 


KaNDiCe21
Regular Member


Date Joined Oct 2007
Total Posts : 106
   Posted 10/28/2007 6:33 PM (GMT -7)   
Remicade is an immune suppressant and you may actually be getting a cold. Thats just a thought, you might want to call your GI ASAP and find out exactly what he thinks might be happening. I've been on the treatments for about 3 months now and have never had any side effects. I haven't gained full remission yet but atleast Im doing better for right now as opposed to hurting constantly, and I can deal with that. Hope you are feeling better.
DX: Crohns in March 2007
Meds: Remicade


caras
Regular Member


Date Joined Apr 2006
Total Posts : 59
   Posted 10/28/2007 10:25 PM (GMT -7)   
I'm not on prednisone. I haven't been on anything in the past year or so other than imuran. I'll call my GI first thing in the morning because I felt even worse today. Just weak and achey and very uncomfortable in my body. Also the past couple of days I just sort of broke down and gave in to my emotions of being sick again. I've been trying to be so strong and positive this past month while being in and out of the hospital and having peri-anal surgery twice. Sometimes you just need to have a good cry.
This weak feeling sure isn't helping. I'll mention antibodies to my GI and let you know what he says.
thanks everyone. I'm not a super regular member but I know I can always turn here for help!

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13470
   Posted 10/28/2007 11:26 PM (GMT -7)   
I did after every infusion for about 3 days. I would take tylenol for about 3 days and then I was fine. Susie


Metallichic
Regular Member


Date Joined Oct 2007
Total Posts : 76
   Posted 10/29/2007 8:04 AM (GMT -7)   
It sounds like your body has built up antibodies to remicade during your time off of it. I've had this happen twice now, once, after 10 months off during a pregnancy, and recently, just this past weekend, after being 4 weeks late on my infusion. Every joint burns and hurts to move, they crack constantly, every ounce of your body hurts, your skin feels like pins and needles, you may get a bad headache, sore throat, fever, sore jaw, and just feel like you got run over by a truck. Definitely call your GI....I went to the ER both time it's happened, received pain meds and solumedrol, and those helped a lot. You just have to wait it out, unfortunately.
Shannon
Asthma (diagnosed at 12)
Fibromyalgia (diagnosed 9/01)
Crohn's Disease/Colitis (diagnosed 12/02)
Diverticulitis (diagnosed 6/07)
Chronic pelvic pain/endometriosis, leading to hysterectomy (9/07)
Torn rotator cuff/labrum (repair 11/20/07)
Bladder sling (8/06), cholystectomy (2/06), tubal ligation (2/06), failed ablation (3/07)
Taking Lialda, Prednisone, Entocort, Remicade, Bentyl, NuLev, HCTZ, Lisinopril, Cymbalta, Effexor, Xifaxan, Flagyl, Lomotil, Frova, Questran powder/Carafate suspension, and pain meds.


caras
Regular Member


Date Joined Apr 2006
Total Posts : 59
   Posted 10/29/2007 12:19 PM (GMT -7)   
i absolutely feel like i've been hit by a truck. today is much better than the past few days. i've called my GI and am waiting to hear back from him

Jenn4dex
Regular Member


Date Joined Mar 2006
Total Posts : 494
   Posted 10/29/2007 12:45 PM (GMT -7)   
I'm in the same boat, just posted on how confused I am about this remicade stuff. I am convinced it's poison. I had the anti serum sickness with the first infusion, but am now on my third and the flu like symptoms come and go. I take the benedryl with the infusion and still feel horrible, I sleep the whole day. I can't drive home, someone has to go with me for my infusion. I am not sure how much more of this I can take. But I have another month to go for the next one so I am sure my doctor won't do anything, it's been in my body now for 4 weeks as well. What can they do? They do nothing but push pain pills on me. Drug pushers, pretty much! It's not like they can take the remicade out of my body. I feel for you, I feel exactly the same way....Hope you get some answers and relief. If you do, can you pass them on? thanks.
Jennifer
Diagnosed 1/06
CD of Terminal Ileum
Taking Pentasa, Prograf and Remicade.


Metallichic
Regular Member


Date Joined Oct 2007
Total Posts : 76
   Posted 10/29/2007 12:50 PM (GMT -7)   
The doctor I had in the ER yesterday knew a bit about Remicade, and being that it was slow, we chatted a bit about what was happening to me and the terrible things the drug does to people. He told me that everyone pinned their hopes on it being the answer, and now they're realizing that it's not a nice drug at all....so many horrible side effects and nasty things that come along with it. It's very scary. I'm convinced now that I want off of it. I refuse to go through this serum sickness again. Between that and the constant infections, the hairy tongue which won't go away, and the reactions during the infusion, i've had enough.

I hope you all can get some answers, and I sincerly hope you are not going through serum sickness....I've had 4 children naturally, without drugs, and this is by far much worse pain than any of those births. Take it easy and best of luck to all of you who are suffering!!!
Shannon
Asthma (diagnosed at 12)
Fibromyalgia (diagnosed 9/01)
Crohn's Disease/Colitis (diagnosed 12/02)
Diverticulitis (diagnosed 6/07)
Chronic pelvic pain/endometriosis, leading to hysterectomy (9/07)
Torn rotator cuff/labrum (repair 11/20/07)
Bladder sling (8/06), cholystectomy (2/06), tubal ligation (2/06), failed ablation (3/07)
Taking Lialda, Prednisone, Entocort, Remicade, Bentyl, NuLev, HCTZ, Lisinopril, Cymbalta, Effexor, Xifaxan, Flagyl, Lomotil, Frova, Questran powder/Carafate suspension, and pain meds.


KaNDiCe21
Regular Member


Date Joined Oct 2007
Total Posts : 106
   Posted 10/30/2007 6:34 PM (GMT -7)   
Hairy tongue? I have little red dots raised up on my tongue. Is that similar to what you have metallichic?
DX: Crohns in March 2007
Meds: Remicade


caras
Regular Member


Date Joined Apr 2006
Total Posts : 59
   Posted 10/30/2007 7:06 PM (GMT -7)   
so i saw my GP and talked to my GI
my GP said it was a common reaction or i could have just actually gotten some of the bug that;s going around.
i definately feel better today.
the biggest problem is the face sweating and the body sweat/chills. i cant get comfortable. but i have no fever.
my GI told me we will go ahead with my scheduled second infusion next week but try benodryl to help with the side effect.
we'll see.
remicade was a miracle for me in the past, so if it is for me again, then i can deal with these sypmtoms.
thanks for all your replies!

caras
Regular Member


Date Joined Apr 2006
Total Posts : 59
   Posted 11/7/2007 8:41 PM (GMT -7)   
hey guys
so i had my second dose of remicade
i wrote about my frist dose 2 weeks ago and all the side effects i had a few days later.
so this time they gave me benedryl before the infusion
during the infusion i didnt have any major reaction except a slight fever building.
now this evening im having the same side effects...except last time it wasnt until 4 days later that i stared feeling crappy.
i have a low fever and im sweaty and chilly and achey. especially in my upper legs. almost like menstrual cramps (from what i can remember since i also have endometriosis and having had my period since june 2004)
i;'ve taken some pain killers and tylenol and over the past hour i'm feeling a bit better.
just generally uncomfortable.
i talked to my GI and we discussed switching to humira.
its just hard to tell if remicade is working because i was in remission before and i didnt have any stomach problems at all before all of this..i just wound up with 2 peri-anal abscesses which i've had drained with drains put it,
so theres no way to really tell if the remicade is working.
its all so confusing.
i just hope i feel better because i was finally starting to gain some strength and get back to work a little bit.
thanks for listening.
cara
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