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Crohn's Disease
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Posted 3/1/2010 4:55 PM (GMT 0)
My son is more than likely starting remicade since he hasn't reached a true remission on imuran.
What should we expect? How do you get ready for the infusion? How quickly did you start feeling better?
My son is small for his age. We are hoping it will help with his height and weight but mostly we are hoping this will be the trick to feeling good. My son is a teen and this disease has really tested all of our patience.
Thanks.
Posted 3/1/2010 5:05 PM (GMT 0)
I've been on Remicade since October and have had mixed results... At the beginning, when the infusions were only a few weeks apart, I noticed significant relief from my symptoms right away. But as the infusions got farther apart, the relief became less and less - my doc is doubling my dose for the next infusion, so we'll see if that helps. My last scope found that the Remicade has been working to reduce my inflammation, which is another plus.

As for what you should expect... Your son's infusion tech will probably give him Benadryl and/or Tylenol to help protect against any allergic reaction before each infusion. At my first infusion, they gave me IV Benadryl and it made me pass out pretty quickly. Since then, they've been giving it to me in pill form, but it still makes me drowsy for the rest of the day. I don't do anything special for the infusion (except take a half-day off of work!) - I just show up, get jabbed, and either watch TV, listen to music or read a magazine while the stuff drips in me.

I'm sure you've heard it before, but I'll say it again - this disease is different for everyone, so there's really no telling how Remicade will affect your son's disease. Here's hoping that he has good results with it!

Best of luck to both of you! Hang in there!

Posted 3/1/2010 6:16 PM (GMT 0)
I got my first remicade when I was a teen (16) so about 7 years ago! My usage of remicade is a little different as I'm on an old-school usage system (only have it to induce remission and not regularly so I've had gaps of 6months - 3 years between infusions!)
In terms of getting ready for the infusion, it can take a looooong time (mine average about 4 - 5 hours) so make sure he has music or take in a laptop and watch movies on it, reading can sometimes be tricky if the IV is in your hand or wrist as I find you end up all of a tangle or its the page-turning hand its in!
Usually I get there, have about an hour before the infusion of obvs and getting the line in and the steroid injection and benadryl injection. Then its infusion time! Takes me about 2 - 2 and half hours and obvs get checked about every 20 minutes. Then once its done usually wait around for another hour or two to make sure no reaction occurs.
Afterwards I sleep for about half a day and wake up feeling a million times better and wa la remission induced (touch wood this trend continues - don't want to tempt fate) and then get stronger everyday. My bloodtest a week after the infusions usually shows the disease has completely backed down. Incredible really!
I hope it works as well for your son as it does for me!
Posted 3/1/2010 11:02 PM (GMT 0)
scoolI've had 19 doses of remicade, I find I start feeling better 2 days after but know of people who get relief right away. I find it really helps with crohn's arthritis. It's going to take longer than normal the first time as they'll want to go slowly to make sure no reaction will happen. Probably 4-5 hours total. To help get the IV in easier have your son be well hydrated the night before and the day of the infusion. That fills the veins and make the 'stick' easier. The day of the infusion make sure he takes no caffine,( coffee, tea, and some soft drinks) as these will cause the body to get rid of fluids which you don't want. I hope it helps you son as much as it helps me, good lucksmile
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