Crohn's Disease Forum » Parents of Kids with IBD » 7th Remicade treatment, still in a flare


02-14-2013, 07:51 PM   #1
Hope345
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7th Remicade treatment, still in a flare

B started to flare before her 7th Remicade treatment so we doubled the dose last week. She is showing signs of a major flare. How long should it take before this treatment works?

I am not sure if I should assume the Remicade is not the drug for her or wait it out. thanks for any advice
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Daughter (age 17) diagnosed with Crohns Colitis/UC 1/2012 Mod/severe changed to U.C.: 11/7/2014 anemia:blood transfusion current: Flare, weaning from Prednisone, still bloating: Meds ,Pentesa: 2000mg twice daily, Vegan diet, mesalamine enemas .Previous: mercaptopurine, Remicade (13 treatments), Imuran, prednisone ), Flagyl, iron infusions, cortifoam,
Continue to be hopeful
Daughter: age 21, undiagnosed: GI issues
02-14-2013, 07:56 PM   #2
Farmwife
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Sorry no advice just support!
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I'm mom to............... Little Farm Girl 9 yr old
Ibd (microscopic)
(12/28/12),
dx Juvenile Arthritis
(12/13/13)
dx Erthema Nodosum
(8/13/14)
Bladder and Bowel Dysfunction
(10/14/13)
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,
Azathioprine
02-14-2013, 07:57 PM   #3
Clash
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Sending hugs and support. C had a major flare after 7th remicade infusion, we upped the dose and shortened the schedule. Next we added MTX. With C, the day after each infusion all of his symtoms go away it just doesn't last, symptoms start to pop up before next infusion. If he doesn't make it this time then we are supposed to rescope.

I hope the doubled dose works quickly.
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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
02-14-2013, 08:00 PM   #4
my little penguin
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You really need to discuss this with your Gi
Especially if she is flaring .
They can give you guidance as to what is to be expected.
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DS - -Crohn's -Stelara -mtx
02-14-2013, 08:00 PM   #5
Tesscorm
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While some respond quickly to remicade, everyone's different and some will take a bit longer. I have no experience (yet) so have only a bit of knowledge about this...

I believe remicade becomes less effective (or effective for less time) if she has begun to develop antibodies. Has she been tested for this? I believe adding methotrexate can also reduce the incidence of antibodies.

I'm going to tag Clash - her son is on both remicade and methotrexate.

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Tess, mom to S
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
02-15-2013, 04:25 AM   #6
Sascot
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Sorry to hear things are not going great. No experience with Remicade, just wanted to send support!
02-15-2013, 07:53 AM   #7
Hope345
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Thank you all for the support. She was tested once for antibodies and it was negative at that time.
I will plan to call the GI today or Monday to just give her an update.
It has helped talking with some of the moms going through the same thing. Thanks so much to Clash... sometimes just talking things out helps.
02-15-2013, 08:01 AM   #8
crohnsinct
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Was she doing fine before this flare? Once a child is responding to Remicade and sailing along with blood tests etc, our GI says symptoms are a flare and he hits it with Prednisone. However, if she was never sailling along then it is an issue of the Remicade not being the right dose or schedule etc. If that is the case then there are alot of things they can do with the Remicade to help it along. Shorten interval, raise does, add another treatment (drug or EEN).

Good luck with your talk with the GI...hoping he/she has some trick up their sleeve!
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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
02-15-2013, 01:31 PM   #9
Hope345
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Yes, we did double her dose last week.
She had one month, when she appeared to be symptom free. It was the first month since she was diagnosed. But during that time she had the flu, so she really didnt enjoy it. I think the flu bug could have put it back into the flare.

I do not want her back on Prednisone, unless is is a must. But she may add in an anitbiotic again.

It is so frustrating. vent, vent, vent. Like all of us, I just want to fix it right now.

thanks again for the support.
02-15-2013, 05:31 PM   #10
NMMom
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Each time Ellie gets a bug of any kind, cold-stomach flu-upper respiratory infection, it plays havoc on her IBD. We can be so so so close to remission and it will throw her right back almost to square one. Our doctor has told us once we get her into a rock solid remission she won't flare with every virus she gets. Maybe you could talk to your doctor about that and see what he thinks?

Hope she feels better soon
02-15-2013, 05:39 PM   #11
Jmrogers4
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Same here virus=flare usually.
Hope she is feeling better.
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Jacqui

Mom to Jack (18) dx Crohn's 2/2010
Remicade - started 1/9/14; 7.5ml/kg every 6 weeks
Past meds: Imuran/Azathioprine; allopurinol; methotrexate; LDN; Prednisone; Apriso; Pentasa; EEN

Husband dx Crohn's 3/1993
currently none due to liver issues
02-15-2013, 06:09 PM   #12
rollinstone
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Hang in there Jules, i think you needa throw the kitchen sink at it, talk to GI bout options, and try not to stress about the things you can't control and try change the things you can, I don't know what her diet is like but maybe it's time to try SCD or gaps?
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