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Crohn's Disease Forum » Parents of Kids with IBD » Remicade High Dosage or Infusions More Often


09-08-2017, 09:20 AM   #1
amw2003
 
Join Date: Jun 2017
Location: Deland, Florida
Remicade High Dosage or Infusions More Often

My daughter has been getting Remicade every 8 weeks and has not developed antibodies but when they tests there is not any Remicade left in her body when it is time for next infusion. Dr. worried she could develop antibodies. He either wants to up the dose and she continues to go every 8 weeks or keep dose the same and go every 6 weeks. Which is best?
09-08-2017, 11:09 AM   #2
Clash
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What dose is she on now? 5mg/kg or 10mg/kg?

My son started at 10mg/kg but never made it to 8 weeks so we did 7 weeks, then 6 weeks then he was increased to high dose remicade (either 12mg/kg or 15mg/kg can't recall which at the moment). He still was unable to extend to 8 weeks. Before surgery he was having high dose remicade infusions every 5 or 6 weeks.

He had no side effects or issues with shorter schedule or dose increase. Mtx(methotrexate) was also added a month or two after he started remicade.

Most often, if the patient is at 10mg/kg with no detectable levels the GI will shorten the schedule before increasing to high dose remicade. My little penguin may know more or can correct me if I'm wrong.
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Clash
Mom to
C age 19
dx March 2012 CD

CURRENT MEDS: MTX injections, Stelara


Dx May 2014: JSpA
8/2014 ileocecectomy
9/2017 G tube

PAST MEDS: remicade, oral mtx, humira
09-08-2017, 11:20 AM   #3
my little penguin
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Ds had three loading doses at 5 mg/kg
Then never made it to 8 weeks
So the upped him
To 7.5 mg/kg every 6 weeks

So in his case we did both at once
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DS - -Crohn's -Stelara -mtx-IVIG
09-08-2017, 11:45 AM   #4
pdx
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My daughter had the same thing happen when she started Remicade. After the induction doses, she was getting 5 mg/kg every 8 weeks, but she wasn't getting better. She had her levels tested 4 weeks after her infusion and had no detectable Remicade. Our doctor switched her infusions to every 6 weeks (keeping them at a dose of 5 mg/kg) and also added methotrexate and budesonide. She was also on EEN at that time.

That combination of things worked and my daughter slowly started getting better. She dropped the budesonide and EEN after a few months, staying on the Remicade and methotrexate. At some point we tested her levels again and they were detectable but still a little low, so her dose was increased to 7 mg/kg, still every 6 weeks.

So we ended up doing both in the end--increasing frequency and dose. But first we increased frequency.
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Daughter E (15) dx with Crohn's 12/18/14 at age 12

Current treatment:

Remicade started 12/24/14 (currently on 9 mg/kg every 6 weeks)
Oral methotrexate restarted 12/2/16 (15 mg weekly)
vitamin D, folic acid, 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
Oral methotrexate 3/13/15 - 5/14/16 (15 mg weekly)
Topical clobetasol for Remicade-induced psoriasis
09-08-2017, 12:43 PM   #5
Maya142
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We increased frequency first - we never made it to 8 weeks. Did the first infusion at 4 weeks, 5 mg/kg. Then later upped to 7.5 mg/kg and then 10 mg/kg. We were able to move the infusions out to 5 weeks, but never any further apart than that.

Later, my daughter went back to Remicade and tried "high dose Remicade" where we did 20 mg/kg (10 mg/kg is the highest approved dose) every 4 weeks. That was for her arthritis though, not her Crohn's. Her Crohn's responded well to 10 mg/kg every 4 weeks or so.

We had no issues even at 20 mg/kg every 4 weeks. No increase in infections or anything like that.
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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
09-08-2017, 01:23 PM   #6
Tesscorm
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My son started at 5 mg/kg but he had no levels at the 8 wk mark. His GI kept him at 5mg/kg but moved him to 6 weeks. He's been there since (3+ years??). Levels were recently tested and are still good at this dose and frequency.

I remember reading about this in the Resesrch sub forum and I believed increasing frequency had a bit more success but I think the increased success was slight.
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Tess, mom to S, 22
Diagnosed May 2011

Treatment:
May-July 2011 - 6 wks Exclusive EN via NG tube - 2000 ml/night, 1 wk IV Flagyl
July 2011-July 2013 - Supplemental EN via NG, 1000 ml/night, 5 nites/wk, Nexium, 40 mg
Feb. 2013-present - Remicade, 5 mg/kg every 6 wks
Supplements: 1-2 Boost shakes, D3 - 2000 IUs, Krill Oil
09-09-2017, 12:06 PM   #7
Dyana
 
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How do they test for levels? I've never been tested for levels.
09-09-2017, 09:38 PM   #8
Tesscorm
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Your GI can order a blood test. It will test for serum levels of remicade and can also show any level of antibodies.
09-10-2017, 11:49 AM   #9
Ladybug12
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Join Date: Jul 2016
Your GI can order a blood test. It will test for serum levels of remicade and can also show any level of antibodies.
To add to this, I was told that the maker of the drug has a program that will pay for the test as well.
09-10-2017, 01:52 PM   #10
Mehita
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DS also was tested and had zero remi in his system at 8 weeks, so his GI upped his dose to 7.5mg/kg AND he went from 8 weeks to 6 weeks, but he had also just had a growth spurt that put him over 50kg. The GI also added a tiny, weekly dose of methotrexate and everything has been great since.

If you're in the US, you might want to check what your insurance allows/requires as well. You may not have a choice on what happens. I'm just finding out now how much our hospital and clinic have been working behind the scenes over the years to get things pushed through our insurance company.
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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
09-14-2017, 11:06 AM   #11
amw2003
 
Join Date: Jun 2017
Location: Deland, Florida
She gets 250ml every 8 weeks, feels fine, only problem is that there is not any Remicade left in her body. Worries me to give a high dose and I think better to go every 6 weeks. The insurance company does not care.
11-29-2017, 10:37 AM   #12
blessedby3miracles
 
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We used to have the highest dose every 4-5 weeks. He just burned right through it. It would only work for about a month, and would take a day or two to kick in after going in the infusion with symptoms. We switched to Humira with MTX and it is working much better. Yes you can have a anti-body test done but your insurance will be a big pain in the you know what paying the claim for the test. They send it to some very unique laboratory (prometheus) not Quest and it's a $2,000 blood test to see if your body is producing anti-bodies to the Remicade or Humira
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Katie
Blessed mom to 3
Jaden-Chrons 15
Drew-Chrons 13
11-29-2017, 10:54 AM   #13
crohnsinct
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Hi Blessed,

Glad you found something that is working! Since you left Remicade a bit ago, you probably aren't aware of the recent developments (like within the past year).

The makers of Remicade are now offering two free levels and antibodies tests per year. The test isn't run through Prometheus but it is still a very accurate test.
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Daughter O dx 2/1/12 at age 12
Crohns & Remicade induced Psoriasis
Remicade
Vit d 2000IU
Multi vitamin plus iron
Calcium

Previously used - Prednisone, Prevacid, Enteral Nutrition, Methotrexate oral and injections, Folic Acid, Probiotics, Cortofoam

Daughter T dx 1/2/15 at age 11
Vitaligo, Precoscious puberty & Crohn's
Remicade
Vit D 2000IU

Previously used, Exclusive Enteral Nutrition, Methotrexate (injections and oral), Folic Acid, Entocort,IBD-AID Diet
11-29-2017, 12:59 PM   #14
blessedby3miracles
 
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That is great!! That test was such a pain to have my insurance pay. So sad considering they said it wasn’t medically necessary which it is!!
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