Crohn's Disease Forum » Parents of Kids with IBD » Starting Remicade tomorrow

11-08-2016, 06:09 PM   #1
nelsonshan's Avatar
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Location: Macomb, Michigan

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Starting Remicade tomorrow

Hi -
I've been away for a year. At my last post, our GI wanted to start Remicade in my 6yo son (at that time, he was only on Pentasa and had a course of steroids previous to that). I just wasn't comfortable with him being so young. We got into U of M for another opinion in December 2015. We decided to put him on Imuran in January right when he turned 7. He seemed to be doing well on it, but mid-July, the stomach pain started again, and became more and more frequent. He also very recently started having loose stools. My son was diagnosed with gastro-duodenal Crohn's with a small area of the cecum involved. His Imuran level was perfect, but with the symptoms, and FC back up to 643, we redid the scopes and MRE 10/28. His stomach is full of erosions and ulcerations, leading into the duodenum. He has new ulcerations in the entire ascending colon, splenic flecture, cecum, and rectum. The MRE showed that an area at the end of the small intestines is also involved. So, he is most definitely not in remission. Time for Remicade. Now I second guess our original dr's opinion, but it's hard to hear that the Remicade may only work for a certain period of time, and then what? My son is only 7. I keep telling myself that there are new things in the pipelines, but it's very hard for me not to consider the future. For now, we are going to try taking it day by day and hope the Remicade works for a long time. Any Remicade advice or what to expect would be appreciated. BTW, dr wants to keep the Imuran on for at least 6 months to try to prevent antibody prevention. Thanks for reading this long post!!
11-08-2016, 06:31 PM   #2
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Maya142's Avatar
It is pretty common to keep kids on Imuran or MTX for antibody prevention.

Some kids last a long time on Remicade. There are several here that have been on it for about 5 years and I know of kids who have been on it for 8 years! Being on something like Imuran or MTX should help prolong his time on Remicade.

Also, the nice thing about Remicade is that you have a lot of flexibility. Often, if there is a loss of response, they will up the dose or the frequency.

As for drugs after Remicade, there are more options now. So far, Humira is approved for kids with IBD. Cimzia and Simponi (both anti-TNFs) are used off-label. Entyvio is also used off-label and has a different mechanism, so may work for kids whom have failed anti-TNFs.

Stelara was also recently approved for Crohn's in adults. It is an IL 12 and 23 inhibitor, so completely different. There are already a couple of kids on the forum who are on it. It will be used more now that it is finally FDA approved for Crohn's.

Plus, there are many, many drugs in trials. I know it's scary to go with a med like Remicade, but you really want to prevent complications like strictures, fistulae and abscesses. And, it's your best chance to avoid surgery. And it sounds like he has Crohn's in a LOT of areas, and you really need to get it under control.

The infusions themselves are quite easy - mostly just long. My kids liked the chance to miss school, watch TV and nap. The nurses fuss over the kids and most kids look forward to the infusions.

Good luck!
Mom of M (20)
diagnosed with Crohn's Disease at 16
Juvenile Idiopathic Arthritis at 12
Juvenile Ankylosing Spondylitis at 16

Mom of S (23)
dx with JIA at 14
Ankylosing Spondylitis at 18
11-08-2016, 07:01 PM   #3
my little penguin
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Big hugs
Remicade can last a long time some adults have been on it over 10 years
Ds has been on humira for close to 5 years
And his disease was Dx at age 7
And started remicade at age 8
He did react but he has food allergies drug allergies etc...
So the doctors were aware that the odds were good he would react to remicade

Adding mtx to remicade for the first 6months can reduce antibodies from forming
When ds reacted he had no antibodies

Fingers crossed it works well
DS - -Crohn's -Stelara -mtx
11-08-2016, 07:16 PM   #4
nelsonshan's Avatar
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Location: Macomb, Michigan

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My son also has drug, environmental, and food allergies. I didn't know that that could make him more likely to react to Remicade.
11-08-2016, 07:38 PM   #5
my little penguin
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Not more likely
Remicade just has a higher reaction rate than humira due to the murine (mouse) protein
For everyone
Ds just reacted to the contrast and gallulidium and glycogen during his ct scan and Mre so they watched him closely
His reactions were very minor
11-08-2016, 09:01 PM   #6
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Maya142's Avatar
They will monitor him very closely. Some kids do react, but others have no reaction or issues at all. My daughters were a bit tired after the infusions but no other issues!

Some infusion centers will give Benadryl and Tylenol before the infusion (which allegedly helps prevent a reaction, though I think recent research shows that it doesn't really make much of a difference). Other infusion centers give steroids. Others don't give anything.

Fingers crossed!
11-08-2016, 11:36 PM   #7
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Join Date: Dec 2014
Location: Portland, Oregon

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My daughter started on Remicade at age 12, and is doing well with it 2 years later. It can take a while to work for some kids, and as Maya mentioned, some need to increase dose and/or frequency to get a good response.

Also, if you have any co-pays for the Remicade itself, be sure to look into Remistart, the Remicade patient assistance program. You can apply regardless of income.

I hope Remicade works really well for your son.
Daughter E (15) dx with Crohn's 12/18/14 at age 12

Current treatment:

Remicade started 12/24/14 (9 mg/kg every 6 weeks)
Oral methotrexate restarted 12/2/16 (20 mg weekly)
vitamin D, folic acid, iron, multivitamin, Prozac

Past Treatment
90% EN via NG tube 2/9/15 - 4/2/15
50% EN via NG tube 4/3/15 - 4/18/15
Supplemental EN via NG tube 5/7/15-6/19/15
Budesonide 3/3/15-6/30/15, 3/24/18-5/18/18
Oral methotrexate 3/13/15 - 5/14/16 (15 mg weekly)
Clobetasol for Remicade-induced psoriasis
11-09-2016, 03:31 AM   #8
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Willowcat05's Avatar
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Location: Glasgow, United Kingdom

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My son started remicade a year and half ago
After all other meds failed it took about 7 infusions to see any difference but he is the best he has been since diagnosis he goes ever 8 weeks and is on tacrolimus to stop antibodys with no reactions other than the hydrocortisone giving him a itchy bum at start of infusion
11-09-2016, 12:37 PM   #9
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Farmwife's Avatar
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Location: Michigan

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My grace is 7.5 now and been on Remicade almost 2 years.
It's been great and she loves her infusion center.
I see your going to CS Motts right?
They have child life specialist there.
There awesome and will help allot.
My girl is still on Imran also.
The two drugs don't affect her health negatively.
She's the healthier one in my family.
I'm mom to............... Little Farm Girl 9 yr old
Ibd (microscopic)
dx Juvenile Arthritis
dx Erthema Nodosum
Bladder and Bowel Dysfunction
Ehlers-Danlos Syndrome dx (1/26/17)
Remicade started on (9/8/14)Every 2 wks
MTX started AGAIN on 11/21/17
EN/EEN- since (1/12/13)
Past Meds- LDN, Humira, Pred, MTX, Sulfasalazine,

Crohn's Disease Forum » Parents of Kids with IBD » Starting Remicade tomorrow
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