I did not get the infusion today :(

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isergodur
Veteran Member


Date Joined Jan 2009
Total Posts : 831
   Posted 4/16/2009 1:26 PM (GMT -7)   
I was due for my fourth Remicade infusion today
But the doc said I could not go because i am Sick mad

And now I have to wait a week.

This is not helping my depression..

But if I look at the bright side I did not get any needles in my arm today.

I don't understand I am always sick, why cant I get Remi while I am sick ?
Does it really matter if I am not sick while I get the infusion and then sick 24 hours later ..
24 year old female
Diagnosed with Crohn's disease in December 2008..
Medication - Asacol, Remicade, Entocort, Cipralex and Cerazette.
My wonderful dogs :) ~ www.poodle.is ~


goldy3
Regular Member


Date Joined Feb 2009
Total Posts : 139
   Posted 4/16/2009 1:34 PM (GMT -7)   
You don't want to get the remicade while you are sick as it lowers yours immune system and can make the cold/virus much worse...sorry you are not feeling well...get well soon!
42 year old woman diagnosed with UC 1991, Jpouch surgery 1992, Crohn's diagnosis 2009
Current meds: 800mg xifaxin, 6mg entocort, Humira (started 3/23/09), synthroid, aciphex
 


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 4/16/2009 3:50 PM (GMT -7)   
Isergodur, people have *died* from infections while on Rem, so it's important to make sure that your virus is under control and that there's no underlying chest (or whatever) infection before they infuse. It's really hard and really frustrating, but the consequences of infusing while you're sick could be terrible.

I do sympathise. You sounded so unwell already; it must be terrible to know you have to wait another week before you can have your infusion.

*hug*

Ivy.
Co-Moderator Crohn's Forum.


isergodur
Veteran Member


Date Joined Jan 2009
Total Posts : 831
   Posted 4/16/2009 7:03 PM (GMT -7)   
I understand about the infection and stuff but is in it as dangerous if you get a virus just a couple of days after the infusion ?
Or is it just during the infusion.

I am having a hard time understanding this :( I just want to feel better.

Just the last weeks have been really crappy and i am getting really depressed and to not get the Remi was a big disappointment. I was looking forward to maybe feel a little better.

Do I need to be worried every time i get sick while on Remi or just during the infusion?

Please help I am totally lost.
24 year old female
Diagnosed with Crohn's disease in December 2008..
Medication - Asacol, Remicade, Entocort, Cipralex and Cerazette.
My wonderful dogs :) ~ www.poodle.is ~


HM
Regular Member


Date Joined Sep 2008
Total Posts : 211
   Posted 4/17/2009 8:00 AM (GMT -7)   
I am on imuran, which my doc says is the step before remicade. He told me that if I am sick for more than 24 hours (meaning a fever, vomiting and or D) then I am to call him right away. He wants to check me to see if I need to be on IV antibiotics due to my medication.

Have you told your doc that you are sick after the treatments? Is that a known side effect?

I am sorry you are so down...*hugs*

35/f   proud single mom of 2

Diagnosed with GERD/Acid Reflex 2002

Diagnosed with IBS 2007

Diagnosed with UC, then Crohn’s 2008

Current medications: Endcort 3mg 2X daily, Pentasa 2 500mg caps 2X daily, Prilosec 20 mg 2X daily (if needed), Probiotics, Calcuim/Mag/Vit.D. Flinstones multi with Iron and Vit. C 500mg daily


Chasity102304
Regular Member


Date Joined Nov 2007
Total Posts : 165
   Posted 4/17/2009 3:21 PM (GMT -7)   
What exactly do you mean when you say you are "sick" all the time?
 
My GI/infusion nurse always check (ask me) if I have had an infection or fever within 2 weeks of the infusion. If so, I can not get the remicade. My infusion nurse also checks my temp before starting the medication so she knows first hand that I don't have a fever at that time.
 
As for worrying about when you get sick while on remicade, you should be more concerned than a person NOT taking remicade as your immune system is compromised. I have been taking remicade for 3 years on and off and only twice have I gotten sick enough to be on antibiotics. When I do get a cold/flu, I watch my temp closely and if it lasts longer than a few days or the symptoms are serious, I go to the dr. As said before, people have "died" from infections/pneumonia while on remicade because the immune system can't fight off things the way it normally does.
 
I would definitely suggest talking to your GI or Primary dr about being "sick" all the time especially while on remicade.
 
GOODLUCK!!
Fibromyalgia DX March 2003
Crohn's DX Jan 2006 (Symptoms since 96-Misdiagnosed as "female" problems-Major flare during pregnancy in 05 which lead to DX)
1st resection July 2007
Currently on Remicade/8 weeks


Kriss
Regular Member


Date Joined Mar 2005
Total Posts : 357
   Posted 4/17/2009 5:52 PM (GMT -7)   
i was supposed to get my second remicade infusion last thursday, but came down with a cold 2 days before : ( we rescheduled to this week, but i'm not quite over it yet, so i'm going in next tuesday instead... the nurse who is in charge of the infusions said that if i get the infusion while i'm sick that it will most likely make me worse... so while she doesn't like to get off schedule, it is better than making me worse, which could lead to something more severe..
try not to get too down about it.. you'll get your infusion soon :)
32 year old female... diagnosed with Crohn's at age 16, then with proctitis in 2005... right hemi-coloctomy April 2001 (removed 12 inches)... currently taking 100mg 6MP, Canasa, acidolpholus, Protonix, B12 injections once a month, 20mg Prednisone, Bentyl and Percoset as needed... just started Remicade


isergodur
Veteran Member


Date Joined Jan 2009
Total Posts : 831
   Posted 4/17/2009 7:30 PM (GMT -7)   
Chasity102304 said...
What exactly do you mean when you say you are "sick" all the time?


My GI/infusion nurse always check (ask me) if I have had an infection or fever within 2 weeks of the infusion. If so, I can not get the remicade. My infusion nurse also checks my temp before starting the medication so she knows first hand that I don't have a fever at that time.



As for worrying about when you get sick while on remicade, you should be more concerned than a person NOT taking remicade as your immune system is compromised. I have been taking remicade for 3 years on and off and only twice have I gotten sick enough to be on antibiotics. When I do get a cold/flu, I watch my temp closely and if it lasts longer than a few days or the symptoms are serious, I go to the dr. As said before, people have "died" from infections/pneumonia while on remicade because the immune system can't fight off things the way it normally does.



I would definitely suggest talking to your GI or Primary dr about being "sick" all the time especially while on remicade.



GOODLUCK!!


I have a constant low grade fever, runny nose or bad cough, I am maybe good for a few days but as soon as I start going out again I get sick :( Now i have such a bad cold I cant even speak..

It is getting kind of old smurf

I just really feel like nothing is working for me, I am in self pity mode at the moment :(

Thanks for all of you support i don't know what I would do with out you guy's
24 year old female
Diagnosed with Crohn's disease in December 2008..
Medication - Asacol, Remicade, Entocort, Cipralex and Cerazette.
My wonderful dogs :) ~ www.poodle.is ~


Sniper
Veteran Member


Date Joined Feb 2004
Total Posts : 6518
   Posted 4/17/2009 8:33 PM (GMT -7)   
Perhaps you have allergies ? those are the symptoms. Talk to your pcp about it, a few pills may make a world of difference...
If we would read the secret history of our enemies,we would find in each mans life sorrow and suffering enough to disarm all hostility.


Aub
New Member


Date Joined Apr 2009
Total Posts : 1
   Posted 4/17/2009 10:55 PM (GMT -7)   
well i got my 4th one today and with in the first 15 mins i threw my guts up so at lease you didnt go though that. does anyone else have this problem?

CatMan
Regular Member


Date Joined Jun 2006
Total Posts : 289
   Posted 4/18/2009 6:35 AM (GMT -7)   
Hi,

I posted a couple of months ago about my delayed Remi infusion. This was due to a long drawn out cold that just wouldn't go away. I was 3 weeks late in getting my infusion. But, I made it through those 3 weeks without any Crohn's problems. As others have said, you should not be getting remicade if you are sick. The consequences could be very bad. Get your infection taken care of, then get your Remicade.
Current Medications:

Pentssa, 1000 mg od
Vitamin D
Red Yeast Rice
Calcium/Magnesium Supplement
Nature's Way Primadophilus Bifidus Probiotic
Remicade infusion; every 8 weeks
Ambien, PRN
Seasilver Whole Food Liquid Nutrition


isergodur
Veteran Member


Date Joined Jan 2009
Total Posts : 831
   Posted 4/18/2009 6:09 PM (GMT -7)   
When to the ER last night because of constant coughing and breathing problems. Thankfully my lungs wore clear but they gave me antibiotics because i have Bronchitis thats nothing serious but the cough is killing me I could not sleep all last night

Thanks for letting me whine :-)

I am glad I did not get my Remi so hopefully I will be better on Wednesday
24 year old female
Diagnosed with Crohn's disease in December 2008..
Medication - Asacol, Remicade, Entocort, Cipralex and Cerazette.
My wonderful dogs :) ~ www.poodle.is ~


CatMan
Regular Member


Date Joined Jun 2006
Total Posts : 289
   Posted 4/19/2009 5:20 AM (GMT -7)   
Yeah, you have to get rid of that infection BEFORE you get the Remicade. Definitely complete the course of antibiotics before your infusion. You don't want to chance any of the nasty complications from the Remicade. What has your experience been with Remicade? Has it helped your Crohn's symptoms?
Current Medications:

Pentssa, 1000 mg od
Vitamin D
Red Yeast Rice
Calcium/Magnesium Supplement
Nature's Way Primadophilus Bifidus Probiotic
Remicade infusion; every 8 weeks
Ambien, PRN
Seasilver Whole Food Liquid Nutrition


gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 4/19/2009 6:32 AM (GMT -7)   
Hi When I was on Remicade I got a nasty lung infestion going on and eventually it just wasn't helping after they doubled the doseage.. Perhaps a good cough syrub will help with the up all night problem it can be tiresome when you cough all night.. hope you feel better soon. lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,hemmies,and still alive.lol gail
"Blessed are those that can give without remembering and recieve without forgetting ~Aurthor Unknown~


Chasity102304
Regular Member


Date Joined Nov 2007
Total Posts : 165
   Posted 4/19/2009 7:36 AM (GMT -7)   
You shouldn't get the remicade until you have been OFF of the antibiotic for 2 weeks. At least that's the "rule" with my GI/infusion room nurses. I'm sure every place differs in guidelines so you might want to check with them.
Fibromyalgia DX March 2003
Crohn's DX Jan 2006 (Symptoms since 96-Misdiagnosed as "female" problems-Major flare during pregnancy in 05 which lead to DX)
1st resection July 2007
Currently on Remicade/8 weeks

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