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05-01-2017, 09:11 AM   #1
Lizette
 
Join Date: Mar 2016
Location: Michigan

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Remicade

Hi all, my son started Remicade in Aug he already had 6 infusions evety 8 weeks, he has gain weight since started. But the bathroom issues are still there, he runs quite few times to the bathroom with gases and mucus, sometimes stools are mushy or solid. Other times he has urgency and he has had accidents for not getting to the bathroom. I was wondering if Remicade is working. He will have a antibodies test in the next few weeks. Also they told me is better to do the test a week before his next infusion. They told me 4 infusions he will start better 5 6 and to be honest I don't see nothing just him running to the bathroom. His labs test where Normal beginning of April. For the 1st time after having Cdiff his c reaction was lower . Any inputs.
Lizette Michael almost 18 in a month
05-01-2017, 10:07 AM   #2
my little penguin
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Are you logging his bathroom trips
Times and dates ?
So you can see if there is any improvement vs looking at it from a distance
Remicade can be tricky
Some kids need higher dose and frequency
Actually most do
Few make to 5mg/kg every 8 weeks

So that might be the issue higher dose higher frequency and some need mtx added to it

I will say if april was the first month his numbers improved you might have had a lot of inflammation going on and it's taking longer to fix it
Rome wasn't built in a day and if he was on minimal meds for years
There may have been more inflammation going on inside then they were aware of.

Tagging pdx
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DS - -Crohn's -Stelara -mtx-IVIG
05-01-2017, 11:31 AM   #3
pdx
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Join Date: Dec 2014
Location: Portland, Oregon

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My daughter took about six months to respond to Remicade, so it can take a while for some kids. But like MLP mentioned, most kids also need to increase the dose too to get a good response. We started at 5 mg/kg every 8 weeks, then increased to 7 mg/kg every 6 weeks, and now we're at 9 mg/kg every 6 weeks. My daughter also does better when she's taking methotrexate along with Remicade.

It's good that your doctor ordered the antibodies test. The test also checks Remicade levels, and that will let you know if your son needs a higher or more frequent dose.
__________________
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
05-01-2017, 11:42 AM   #4
Maya142
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The fact that he is gaining weight is a GOOD sign!

It will take time. You may need to play with the dose and frequency. My daughter went from 5 mg/kg to 7.5 mg/kg to 10 mg/kg every 5 weeks or so. That worked. You also may need to add other medications - some kids need to be on MTX with Remicade for example.

It also does take a long time for healing to occur - months, not weeks. He may need a higher dose and more time.

I know it's hard to be patient but considering he has improved somewhat, it sounds like you are on the right track -- he may just need some adjustments to his medications.
__________________
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
05-02-2017, 12:01 PM   #5
Lizette
 
Join Date: Mar 2016
Location: Michigan

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Are you logging his bathroom trips
Times and dates ?
So you can see if there is any improvement vs looking at it from a distance
Remicade can be tricky
Some kids need higher dose and frequency
Actually most do
Few make to 5mg/kg every 8 weeks

So that might be the issue higher dose higher frequency and some need mtx added to it

I will say if april was the first month his numbers improved you might have had a lot of inflammation going on and it's taking longer to fix it
Rome wasn't built in a day and if he was on minimal meds for years
There may have been more inflammation going on inside then they were aware of.

Tagging pdx
Yes he is logging it him self, how many times he goes hoe many are gas, mucus, mushy, solid. If there's is blood. I made him right everything for the past 4 months. He had Cdiff in March last year Whole colon with inflamation. By aug he only had left colon sig,oíd and rectum with inflamation.
His dose is 7mg . His dr does not want to add mtx and we don't either.there is no reason to compromise his imune system. The antibodies test I'm pushing it. As a matter of fact I got ir free through Jensen. They do te test for free 2times a year. But we have to do it one week prior his Remicade. So that would be next week.
Plus I forgot to mention to you he gets fever 10 to 20 days after Remicade every time.
05-02-2017, 12:02 PM   #6
Lizette
 
Join Date: Mar 2016
Location: Michigan

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What I understand using mtx is just so you won't build antibodies that fast..
05-02-2017, 12:11 PM   #7
Maya142
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That is true, but MTX is also used by itself for Crohn's. It is used for additional disease control. I can think of multiple kids on here who have tried to stop MTX with Remicade/Humira and then flared (including my daughter!!). MTX really does work.

It does also prevent antibody formation so the kiddo can stay on Remicade for longer. Now it is pretty standard to prescribe Remicade with MTX (though of course it depends on the doctor).

At a low dose, it is usually used just to prevent antibodies, at higher doses, it's also used for disease control.

Once you have the levels and antibody test back, you will have more info. It may be that he needs a higher dose/more frequent infusions. You can go up to 10 mg/kg every 4 weeks.

Or it may be that he has built up antibodies and that you need to try something else (Humira, Stelara, Entyvio etc.)

Hang in there!!
05-02-2017, 12:36 PM   #8
my little penguin
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Mtx also boosts the effectiveness of remicade/humira
You don't have to use it

I was stating what others have done that has worked when remicade by itself was not enough

Everyone is different
But the majority on here don't use higher dose remicade or added mtx by choice
Most use it because remicade by itself did not work
And their child needed to get better

We tried "picking" the mildest drugs for ds or even diets free of -you name we did it
But unfortunately his disease had different ideas
And the disease dictated what worked and what didn't
So we use what works for my kiddo

Possible Side effects are there
But quality of life without the right combo meds is horrid

It's a learning curve that takes a long time to find the right combination

Is he on een ?
Some use that to boost healing so remicade can take over as well

Again just different things folks have tried
What works for your kid to get to normal is up to you ,him , his GI and the disease

Hope you find the right combo soon
05-03-2017, 07:37 AM   #9
Lizette
 
Join Date: Mar 2016
Location: Michigan

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Mtx also boosts the effectiveness of remicade/humira
You don't have to use it

I was stating what others have done that has worked when remicade by itself was not enough

Everyone is different
But the majority on here don't use higher dose remicade or added mtx by choice
Most use it because remicade by itself did not work
And their child needed to get better

We tried "picking" the mildest drugs for ds or even diets free of -you name we did it
But unfortunately his disease had different ideas
And the disease dictated what worked and what didn't
So we use what works for my kiddo

Possible Side effects are there
But quality of life without the right combo meds is horrid

It's a learning curve that takes a long time to find the right combination

Is he on een ?
Some use that to boost healing so remicade can take over as well

Again just different things folks have tried
What works for your kid to get to normal is up to you ,him , his GI and the disease

Hope you find the right combo soon
Hi, I don't know what is een.
He I son Remicade plus Pentasa 4pills 500'mg each, vitamin D 50,000 once. A week, probiotic and Neocate Jr supplement. Now his crohn in perianal. That's what make it difficult. The Remicade suposly is for fistulas which he has " only one superficiality anal area. He still gets abscesses which drain, no pain at all.
Thank you ladies.
By the way I'm also on. A group of parnets with children with crohn in Facebook, is nay one of you in that group?
05-03-2017, 10:32 AM   #10
my little penguin
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Een is exclusive enteral nutrition
Basically formula only no solid food
Typically 6-8 weeks

Ds is on it again
Drinks neocate jr chocolate as well
05-09-2017, 09:21 PM   #11
Lizette
 
Join Date: Mar 2016
Location: Michigan

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Een is exclusive enteral nutrition
Basically formula only no solid food
Typically 6-8 weeks

Ds is on it again
Drinks neocate jr chocolate as well
Thanks, Michael has never been on that. Maybe because his crohns is different? I will keeepmyou posted on his levels, he had the test done yesterday(Monday)
Lizette
05-09-2017, 09:24 PM   #12
my little penguin
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Een is as effective as steriods at reducing inflammation
So it's used in kids and adults instead of steriods to reduce inflammation
It works for some but not all

Fingers crossed on remicade levels
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