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Crohn's Disease Forum » Parents of Kids with IBD » Remicade. 4th infusion


12-23-2016, 09:25 AM   #1
Lizette
 
Join Date: Mar 2016
Location: Michigan

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Remicade. 4th infusion

Hi all, its being 2 months since my last post. Michael had his flu shot 2 weeks and few days before his 4th infusion , His Ifusion was Dec 3. He labs came all good with the expecting of 2 things that are low but normal there is no concern of that. His CRP was low after 7 months of being very high, now is 6. Very good right? That means no inflamation, a keep asking his dr every time we go to do a calprotectin test, and he always said no because we know is going to come with inflamation. So anyways, after this infusion it seems that he still goes a lot to the bathroom, urges. I see this normal, I thought Remicade will help it has not at this point , yes he has gain weight, his level of energy is good,but he gets tired so early, he is in bed at 8:30 every day. , his iron is normal, his RBC is normal after being so low . So in some way Remicade is working, but not in the bathroom issues. His next infusion feb 3 .. give it more time the dr keeps telling me is due that his Crohn is in the colon that's why it takes longer.. I don't know what to think.. any advice.
12-23-2016, 10:35 AM   #2
my little penguin
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Join Date: Apr 2012

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Urgency typical is rectal which takes the longest to heal
Even with remicade
That took a very long time for ds to heal
Fatigue is common some his body is catching up
It will take a while
Ds always has had below normal crp once starting remicade
Or humira
That's a good thing
It will go up if there is a large amount of inflammation

Rectal inflammation typically does not show in blood work
Also his system needs time to calm
It was in inflammation for a long time

I would wait and see
If things don't improve you can increase dose and frequency
Ds needed this
He had to have 7.5 mg/kg every 6 weeks
That was his magic number
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DS - -Crohn's -Stelara
12-23-2016, 10:50 AM   #3
Farmwife
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Join Date: Apr 2012
Location: Michigan

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It took my dd a year of Remicade to make a huge change.
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I'm mom to............... Little Farm Girl 8 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 4 wks
Azathroprine started on 10/9/15
EN/EEN- since (1/12/13)
Past Meds- LDN, Humira, Pred, MTX, Sulfasalazine
12-23-2016, 11:39 AM   #4
Maya142
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It took several months before my daughter saw a big change with Remicade. In her case too, the rectal area took longest to heal. We had just added hydrocortisone enemas when it magically fixed itself and the urgency and bathroom issues went away (she hated the enemas and only used them twice, so we know it was the Remicade that helped and not the enemas).

We also had to play with the dose and frequency - my daughter needed 10 mg/kg of Remicade every 5 weeks or so.

The fact that his CRP has gone down is very promising. Healing just takes time. Hang in there!
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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
12-23-2016, 11:01 PM   #5
Lizette
 
Join Date: Mar 2016
Location: Michigan

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Urgency typical is rectal which takes the longest to heal
Even with remicade
That took a very long time for ds to heal
Fatigue is common some his body is catching up
It will take a while
Ds always has had below normal crp once starting remicade
Or humira
That's a good thing
It will go up if there is a large amount of inflammation

Rectal inflammation typically does not show in blood work
Also his system needs time to calm
It was in inflammation for a long time

I would wait and see
If things don't improve you can increase dose and frequency
Ds needed this
He had to have 7.5 mg/kg every 6 weeks
That was his magic number
Thank you little pingüin. Thats exactly michael's dose 7.5 mg, so the. I'm guessing that's why is taking longer the Remicade because of the rectum. Y si the inflamation was there since he had Cdiff iend of March. In aug he had an MRI tat show only inflamation on left colon all the way down. I'll wait nad see how he does. Thank you. Is there a blood test to show rectal inflamation or jus by doing a Colonoscopy?
12-23-2016, 11:07 PM   #6
Lizette
 
Join Date: Mar 2016
Location: Michigan

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It took several months before my daughter saw a big change with Remicade. In her case too, the rectal area took longest to heal. We had just added hydrocortisone enemas when it magically fixed itself and the urgency and bathroom issues went away (she hated the enemas and only used them twice, so we know it was the Remicade that helped and not the enemas).

We also had to play with the dose and frequency - my daughter needed 10 mg/kg of Remicade every 5 weeks or so.

The fact that his CRP has gone down is very promising. Healing just takes time. Hang in there!
Thank you Maya, I wish we could use enemas, but Micahel anal area is so painful when we do it dueño to a la abscesses tried suppositories of canasa but was painful just to go in. So h Evan not have nothing put in the anal area, hopefully he gets better like you ladies said I guess I have to be patient.. yes his CRP was down finally. Never had it high even when diagnosed but his Cdiff was os bad on all the colon. So I'm guessing that's why. Thank you again.
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