Remicade infusion experience - I could use some help

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PV
Veteran Member


Date Joined May 2006
Total Posts : 1177
   Posted 10/10/2009 5:22 PM (GMT -7)   
Hi. I need some help with folks who are familiar with remicade infusion reactions and/or serum sickness and the development of antibodies to remicade. So, here's what's going on. When my husband first started remicade last year, he was also on high doses of steroids, which were slowly tapered and stopped. When he dropped down to 10 mgs of steroids, when he got his remicade infusion, he came home from his infusion, and then 2 hours later, developed a fever, and joint pain. This lasted about 14 hours, and then, things slowly got back to normal. We mentioned this to our doctor, and he said, ok, no problem, we'll pre-medicate him with solumedrol prior to the infusion. This has helped a little.

So far this year, he's gotten 5 infusions, each with pre-medications. And what happens, is from about 2 in the afternoon (he finishes his infusion around noon) to about 2 am, he has a fever that won't go away with tylenol, a slight headache, and has joint and muscle aches and pains. It's not bad, it's bearable. Then, the next day, the joint pain is gone, but there's slight muscle stiffness. The day after that, everything's back to normal.

I mentioned this to our doc, and he wants him to try a tapering course of prednisone during and after the infusion, to perhaps make it better . . . but he won't explain what's going on. Is this just an allergic reaction? Is this serum sickness? Is this because his body has built up antibodies to remicade? Or is this the flu like symptoms that people sometimes develop after an infusion?

I'd appreciate some help here to figure out what we should do here. I want to keep my husband on remicade for as long as possible, since it saved him from surgery. So, I want to do what is necessary to keep Remicade effective for my husband for as long as we can.

So, what I want to know is this: is this a flu like reaction that is pretty normal, and we just have to write off the infusion day and sleep it off, or is this something like serum sickness because of antibodies that we need to pay more attention to, to try to avoid by taking the week of steroids?

Help please.

Thanks,
PV
Husband with Crohn's
Diagnosed March 2003 Ulcerative Proctitis
Diagnosed March 2008 Crohn's & C-diff, hospitalized 45 days
Canasa, Lialda, Remicade, VSL#3, Florastor
In Remission since June 2008
Stopped vancomycin for c-diff Jan 1 2009
C-diff free, until Sep 2, 2009
Fighting c-diff, I guess for life


andorable
Veteran Member


Date Joined Jun 2005
Total Posts : 981
   Posted 10/10/2009 8:16 PM (GMT -7)   
Hi PV,
Its been a little while since I was on remicade but I do remember I was always really tired after my infusion and eventually I did build the antibodies and had to stop getting infusiions. Im not a great help to you here as that time is a blur for me since I was also on heavy pain killers , but hopefully someone will be along soon who has had it more recently or is having it now. If it persists humira could be a better option for your husband. But please make sure his doc knows all this, dont just put up with it. Hang in there and take care

MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 10/10/2009 8:23 PM (GMT -7)   
I did get drug induced lupus from remi and humira. One thing was that I hurt so bad I could just bearly move. Walking was like trying to get thru chest deep snow after having a rubber hose taken to my feet. My joints were so swollen for weeks I could not bend my fingers enough to open a door, I had to put large c clamps on the door.
I have had a constant low grade fever for years now.
What can it hurt to get the blood test for lupus?
 


Forum Co-moderator - Crohn's Disease/Thyroid Disorders:_All comments have the caveat contact your local health care provider.

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Post Edited (MMMNAVY) : 10/10/2009 9:28:50 PM (GMT-6)


Ides
Forum Moderator


Date Joined Nov 2003
Total Posts : 7077
   Posted 10/10/2009 8:49 PM (GMT -7)   
First of all, if your husband is asking for an explanation of what is causing the post-infusion symptoms, and the doctor is not offering an explanation, why not? Has he said he can't be sure of the cause or does he just refuse to answer? Personally, I expect an answer when I ask for an explanation. Some docs are better at communicating than others but at some point your husband's GI needs to get in to the habit of answering your husband's questions.
 
Given the quick onset of symptoms after his infusion and the fact that they resolve quite quickly without steroids makes his problem sound like an infusion reaction and/or serum sickness problem. I guess an infusion reaction is/might be technically a type of serum sickness. If you think he has developed antibodies to the the Remicade there is a test to check for that: the PROMETHEUS® Serum Infliximab/ HACA Measurement.
Moderator Crohn's Disease  & Osteoarthritis Forums
CD, Ankylosing Spondylitis, lupus, small fiber peripheral neuropathy, avascular necrosis, peripheral artery disease, degenerative disc disease, asthma, severe allergy and a host of other medical problems.
 


PV
Veteran Member


Date Joined May 2006
Total Posts : 1177
   Posted 10/10/2009 9:19 PM (GMT -7)   
The doc just said, he maybe having an infusion reaction, or building antibodies, and to just start a medrol dose pack along with the infusion. He did mention the prometheus test, but said that a lot of people develop antibodies, but never have a serious reaction, so he didn't think the test would give any good data points. Basically he wanted him to continue the remicade, because it's been working so well for him, and even if he had antibodies, it wouldn't change his course of action anyway, unless he had a serious reaction. Don't get me wrong, I really like his GI, because he does care a lot - I think perhaps he was just in a hurry that day. My husband does have another appt with him before his next infusion is due, so perhaps we can get it sorted out with him then. But I'd still like to know if other people on this forum have had similar problems, and if so, what they did.

From about 2 pm to about 2 am, he has a fever and the worst of the joint pain etc. even with the premedication with 40mgs of solumedrol. After that for another 24 hours, he has slight body ache, and a headache, both quite manageable with tylenol, but is back at work. The day after that, he's pretty much back to normal. So, I don't think it's lupus - he has about 2 off days after remicade, it doesn't continue after that. So, in terms of the side effects listed, he gets a fever for about 12 hours, arthralgia (joint pain for about 24 hours), myalgia (muscle pain for about 30 hours), and a slight headache (for about 36 hours), and then, he's back to normal. I think it is serum sickness, because his body is building antibodies - but I guess it's not enough to cause serious reactions.

I remember this infusion reaction starting only after my husband dropped below 20 mgs of prednisone. Does anyone here take oral steroids before an infusion to ward off infusion reactions? We're thinking of maybe steroids 2 days before and taper for 2 days after an infusion. Do you think that's a reasonable thing to do to prevent serum sickness? Or do you think the infusion reaction is serious enough to warrant looking for antibodies, and if he has developed them, stop the remicade?

Thanks for your help folks!

PV
Husband with Crohn's
Diagnosed March 2003 Ulcerative Proctitis
Diagnosed March 2008 Crohn's & C-diff, hospitalized 45 days
Canasa, Lialda, Remicade, VSL#3, Florastor
In Remission since June 2008
Stopped vancomycin for c-diff Jan 1 2009
C-diff free, until Sep 2, 2009
Fighting c-diff, I guess for life


frogeleita
Regular Member


Date Joined Jul 2009
Total Posts : 342
   Posted 10/10/2009 11:58 PM (GMT -7)   
Well..i have had two infusions..knock on wood...i feel great...the symptom being that the fever..has been described to me by the nurse administering..it..as an allergic reaction...a little joint pain..when its not bad...is something he might just overlook...especially if tylenol takes it away..or it goes away on its own...it all comes down to...how bad are the side effects versus the benefit..of how it helps his Crohn's...

 Crohn's anal fistula Lupus Hyperthyroid..Pentasa Remicade

 


PV
Veteran Member


Date Joined May 2006
Total Posts : 1177
   Posted 10/11/2009 7:31 AM (GMT -7)   
What I am worrying about is that from what little I understand, serum sickness is the way by which the body builds antibodies. If this is an allergic reaction, I'm ok with just bearing through it, it's just a day, and he manages. But if it is serum sickness, it'll only get worse, if it is allowed to continue. Because once the body starts building antibodies, the next time it sees the same problem (remicade), it'll have a stronger response, and the next time an even stronger response etc. So far, I haven't seen it getting worse . . . but it's hard to tell.

It's probably a good idea to not feel like crap the day of the infusion anyway. So, we'll discuss with the doc getting on a short course of steroids before the infusion, to see if that takes care of it. If anyone else has similar experience, or has anything to add, I'll appreciate it.

Thanks,
PV
Husband with Crohn's
Diagnosed March 2003 Ulcerative Proctitis
Diagnosed March 2008 Crohn's & C-diff, hospitalized 45 days
Canasa, Lialda, Remicade, VSL#3, Florastor
In Remission since June 2008
Stopped vancomycin for c-diff Jan 1 2009
C-diff free, until Sep 2, 2009
Fighting c-diff, I guess for life


vadreamer1
Regular Member


Date Joined Aug 2006
Total Posts : 196
   Posted 10/11/2009 9:46 AM (GMT -7)   
After 2 years on Remicade - I started having an immediate reaction to the infusion. With in 10-15 minutes of starting it. I switched to Humira and haven't looked back. I'm hoping I do well for a while on Humira. I'm not sure what would be next for me.

andrealeigh71
Regular Member


Date Joined Sep 2009
Total Posts : 96
   Posted 10/18/2009 7:08 AM (GMT -7)   
My husband just had his 2nd remicade infusion and the day after the infusion, his mucles and skin were sore and tender to the touch. He was also quite nauseous. We are going to address this at our next gi appointment and I can let you know what our dr. says....

crohnielass
Veteran Member


Date Joined Mar 2009
Total Posts : 1118
   Posted 10/18/2009 1:38 PM (GMT -7)   
One of my crohnie friends is on remi the day after the infusion she has flu like symptoms  for a couple of days, then feels great Bev x 

Diagnosed with crohn's at 13 now 42
resection, right hemi 1993 In remmision from 93 till last sept with no meds or docs
2 resections small bowel  and fistula jan 09 and given temp stoma.  reversal sheduled for Nov09 Meds:Pentasa 500mg 3x day,  B12 shots, every 3 months, iron syrup,loperimide,folic acid, Back on citalopram 40mg (for Anxiety.)


isergodur
Veteran Member


Date Joined Jan 2009
Total Posts : 831
   Posted 10/18/2009 3:26 PM (GMT -7)   
I only got 5 infusions, after them I was in good shape a little tired maybe but no fever.
but now the docs think I have joint pains and positive ANA test due to remicade.

Why don't you see another doc and ask him for his opinion ?
25 year old female
Diagnosed with :
Endometriosis march 2007
Anxiety disorder august 2007
CD/UC they dont know witch October 2008
Autoimmune Hepatitis in July 2009
And now they think I have Lupus :S

Medication - Asacol, Pariet, Cipralex and Cerazette.
Past medication Remicade
My wonderful dogs :) ~ www.poodle.is ~


Berkeley5
New Member


Date Joined Oct 2009
Total Posts : 5
   Posted 10/18/2009 8:05 PM (GMT -7)   
I am actually getting my 5th Remicade infusion on Wednesday morning.  I have had a different experience than most who have replied; I have not had an allergic reaction and my severe joint pain is a symptom of a CD flare, not induced from the Rem.  I start feeling the joint pain and develop the abdominal pain about the 3-4th week after Rem.  My Dr.'s agree that my body is slowly responding to Rem but not negatively.  We are waiting until the 6th round to see if I need to switch to another med.  Ugh! 

Iram
Regular Member


Date Joined Jul 2003
Total Posts : 145
   Posted 10/19/2009 9:25 AM (GMT -7)   
I just have had just single infusion so far, I am scheduled for another in two weeks. Too early to tell what is going on, some people talk about immediate impact, I am not so sure in my case. We will wait and see what happens.
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