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I did not get the infusion today :(

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Crohn's Disease
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Posted 4/16/2009 8:26 PM (GMT 0)
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 ..
Posted 4/16/2009 8:34 PM (GMT 0)
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!
Posted 4/16/2009 10:50 PM (GMT 0)
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.
Posted 4/17/2009 2:03 AM (GMT 0)
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.
Posted 4/17/2009 3:00 PM (GMT 0)
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*
Posted 4/17/2009 10:21 PM (GMT 0)
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!!

Posted 4/18/2009 12:52 AM (GMT 0)
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 :)
Posted 4/18/2009 2:30 AM (GMT 0)

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
Posted 4/18/2009 3:33 AM (GMT 0)
Perhaps you have allergies ? those are the symptoms. Talk to your pcp about it, a few pills may make a world of difference...
Posted 4/18/2009 5:55 AM (GMT 0)
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?
Posted 4/18/2009 1:35 PM (GMT 0)
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.
Posted 4/19/2009 1:09 AM (GMT 0)
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
Posted 4/19/2009 12:20 PM (GMT 0)
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?
Posted 4/19/2009 1:32 PM (GMT 0)
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
Posted 4/19/2009 2:36 PM (GMT 0)
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.
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