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09-16-2014, 07:34 AM   #1
Worried mama
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Remicade?

Can somebody enlighten me about remicade? How often is it needed, once a week? Do you eat at all while on it? Sorry, new here and ignorant about so many crohns related things! Thank you...
09-16-2014, 07:40 AM   #2
Mehita
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Remicade is an infusion done outpatient at the hospital or at a clinic.

It usually starts out at 5mg/kg for kids, but can be adjusted.

Initially you have a dose at week 0, week 2, week 6 and then every 8 weeks thereafter, though that can vary by patient.

The infusion, start to finish for my son, is about four hours.

During infusions he eats, plays video games, watches TV, snoozes.

Some doctors pre-medicate with Tylenol and Benedryl, some don't.

I'm sure others will jump in soon...
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Mom of DS, age 17, dx Crohn's and Celiac Oct 2008
- Remicade, started Nov 2013, added Solumedrol June 2015
- added Methotrexate/Folate March 2016
- Multivitamins, Probiotics, Vit D
- Small bowel resection, Jan 2013
09-16-2014, 10:36 AM   #3
tnthudson
 
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^^^ This is pretty much exactly what my son does/is planning to do, so far (only 2 treatments under his belt).
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Son dx with UC in October 2013 @ 16 y.o.
Have gone through a dizzying array of various Aminosalicylates, Immunomodulators and Antibiotics.
Could not stay off Prednisone until beginning Remicade & Otrexup (Methotrexate) Aug. 2014. We'll see how it goes...
09-16-2014, 11:52 AM   #4
kiny
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What Mehita said, 5mg/kg every 8 weeks is standard for both adults and kids worldwide.

You can eat / drink / walk around during infusions. The only thing you need to be sure of is that you always have someone close to you, who can shout to a nurse if you have a reaction to the remicade.

The times I got remicade, I was not allowed to lose eye contact with the nurse, meaning I had to stay in her field of view and not go run out into the hall until the infusion was done. I think that's important, because I have seen a few ppl get a reaction and they usually are unable to call for help.
09-16-2014, 12:23 PM   #5
Mehita
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I think most pediatric centers require a parent to stay close by. I will only run to the bathroom when the nurse is in the room.

Also, the ped centers usually spoil the kids rotten. We've had snow cone day, had super heroes visit, and gotten small gifts during the holidays.

You may want to have a little discussion about the other kids you'll see at your center. Ours also treats a lot of the outpatient cancer and Leukemia kids and their appearance, while common in the waiting room, is probably not what your kiddo sees much of in his life.
09-17-2014, 10:30 AM   #6
SupportiveMom
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Jj88 There is a website that might help: https://www.janssenaccessone.com/pag...sist/intro.jsp

When my kid was on it they paid the rest of the co pay (20%). Granted it was only for 6 months, but it looks like there are other plans to help after you are on it for a year or so.
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Mom of 16 yr. girl w/Indeter.Colitis Sep. 2012(age 11) Nov.2012 Crohn's Sep. 2014 Crohn's Colitis, UC Nov 2015, Crohn's Feb. 2016

Ileostomy surgery July 2015

Current Meds: None!
Previous Meds: Humira, Remicade, Methotrexate, Cipro, Flagyl, Zofran, Cortifoam, 5-ASA suppository, Questran, Mezavant, EEN (Peptamen Jr. 1.5) by NG tube, Antibiotic Cocktail (Vancomycin, Metronidazole & Doxycycline), Simponi, Prevacid, Imuran, prednisone
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09-17-2014, 10:56 AM   #7
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Sorry to hear that. There are forum rules found here: http://www.crohnsforum.com/faq.php?f..._new_faq_item3. I didn't see your post so I can't advise on how the rules applied to it, but feel free to ask whomever sent you the note that the post was removed.

We all find our best paths in regards to food, medicine, etc. Honestly ask. It is probably something simple.
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