Crohn's Disease Forum » Parents of Kids with IBD » Sons condition worsening on Remicade


03-26-2018, 05:30 AM   #1
RoseH
 
Join Date: Mar 2018
Location: Dublin, Ireland
Sons condition worsening on Remicade

My son is 18. He was diagnosed with Crohn's disease nearly 2 years ago in his small intestine. He was put on Remicade (infliximab) which worked really well for him. He now has infusions every 8 weeks. Over the last 6 months he has felt less well. These are his symptoms - fatigue, 'brain fog' (he feels he is not able to concentrate or study like he used to do), loss of appetite, stomach discomfort. Whereas he used to feel fine after an infusion now he feels bad (dizziness, tiredness) for 24/48 hours after it. We have been to see his consultant who says his levels are normal and his Crohn's is not active. However he is cannot play for his football team as it makes him too tired and often cannot go out with his friends for the same reason. Does anyone have any advice or has anyone has a similar experience?
03-26-2018, 12:57 PM   #2
crohnsinct
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Join Date: Mar 2012
Location: California

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What is the GI basing his/her decision that his Crohn's is not active on? Blood labs? Fecal labs? Scopes? Imaging?

If all of the above, I would test vitamin levels. Could be he is low on Vitamin d3 and/or vitamin b12. Those are the usual suspects for the things you are mentioning.

If the GI hasn't fully looked at everything mentioned at first, I would try to get a full assessment. Could be there is some simmering inflammation (which could interfere with vitamin absorption) that needs to be addressed.

What was his Remicade level? The guidelines are 4-7 but many people just need higher levels to tackle inflammation.

Incidentally, my daughter's GI just told us that research is showing that >80% of patients on an every 8 week schedule do not have therapeutic drug levels in their body at 8 weeks.
__________________
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
03-26-2018, 01:00 PM   #3
crohnsinct
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Join Date: Mar 2012
Location: California

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Also, wanted to address stress. It could wreck havoc on your body. 18 is a big change for most kids. Has he been under added pressure etc? Perhaps he could talk to a therapist trained in treated kids with chronic health conditions.
03-26-2018, 01:55 PM   #4
Tesscorm
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Location: Ontario

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My son started remicade at 18 as well. His GI checked levels at his first 8 week infusion (ie after loading doses) and found he did not have high enough levels and moved him to 6 weeks (he's been at six weeks for approx. 5 years). He check levels again last year and his serum levels were at either 12 or 20 (sorry, I remember they were higher than what is believed to be therapeutic but can't remember number exactly, although I'm leaning towards 20). When I asked about extending the cycle to 8 weeks, his GI said he was comfortable with my son's level as it allowed for a 'cushion' should an infusion be delayed. He said he had a number of patients at that level.

Also, has his dose changed at his 8 week infusion? ie remicade dosage is determined by weight (ie 5 mg per kg). If he was being given a certain total dose starting two years ago, he's probably gained weight since... has his total dose been adjusted? Here, the dosage is determined at the clinic at infusion but, perhaps, where your son receives his remicade, they wait for instructions to change the total dose?? You'd assume these things are being monitored but... never hurts to ask.

Also, agree with crohnsinct re the testing... if you're GI has not done full testing, it wouldn't be the first time GIs just 'assume' things are fine... You may have to insist on further testing. When was the last time your son had an MRE or scopes. For the first few years after my son's diagnosis, he was getting annual MREs and/or scopes (sometimes both in the same year).

And, on the chance that he's not absorbing enough nutrients, will he drink nutritional shakes? Since starting remicade, my son drinks one to two Boost shakes each day. It adds calories to his diet and increases his nutritional intake. But, keep in mind, the shakes should NOT replace meals... or you'll be no further ahead. See if he's willing to add them as snacks. The shakes won't fix any simmering inflammation but may help alleviate some of the symptoms while other things are being looked into...
__________________
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
03-26-2018, 04:31 PM   #5
Maya142
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These are his symptoms - fatigue, 'brain fog' (he feels he is not able to concentrate or study like he used to do), loss of appetite, stomach discomfort. Whereas he used to feel fine after an infusion now he feels bad (dizziness, tiredness) for 24/48 hours after it.
I am also wondering how the GI knows your son's Crohn's isn't active. I would want an FCP at the very least and possibly imaging (MRE), depending on what the FCP is. I wouldn't just go by blood work because it isn't always accurate. But if blood work has been done recently, what is his ESR and CRP? Are they usually elevated when he is flaring?

In terms of the infusions, my daughters both were VERY tired after infusions for a day. The nurses actually warned them it might happen at two different infusion centers/hospitals. So clearly some kids are tired after infusions and feel crummy and other kids feel GREAT after infusions. It seems to vary. For them it lasted 24 hours. They only had fatigue, no dizziness.

Has he been checked for anemia? Or iron deficiency? My daughter had many of those symptoms - brain fog, fatigue etc. and we kept blaming school and harder classes etc. It turned out her Ferritin was VERY low. We added iron supplements but she could not tolerate them and they did not bring her Ferritin up. She ended up needing iron infusions.

We have also heard most kids do not make it 8 weeks for infusions...my younger daughter never made it past 4-5 weeks and my older daughter needed infusions every 5 weeks.
__________________
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
03-28-2018, 01:40 PM   #6
RoseH
 
Join Date: Mar 2018
Location: Dublin, Ireland
[QUOTE=RoseH;1003368]My son is 18. He was diagnosed with Crohn's disease nearly 2 years ago in his small intestine. He was put on Remicade (infliximab) which worked really well for him. He now has infusions every 8 weeks. Over the last 6 months he has felt less well. These are his symptoms - fatigue, 'brain fog' (he feels he is not able to concentrate or study like he used to do), loss of appetite, stomach discomfort. Whereas he used to feel fine after an infusion now he feels bad (dizziness, tiredness) for 24/48 hours after it. We have been to see his consultant who says his levels are normal and his Crohn's is not active. However he is cannot play for his football team as it makes him too tired and often cannot go out with his friends for the same reason. Does anyone have
03-28-2018, 01:41 PM   #7
RoseH
 
Join Date: Mar 2018
Location: Dublin, Ireland
Thank you to all users for your post on this we are visiting our consultant soon and it is great to have these questions to ask
03-28-2018, 02:03 PM   #8
Voyager
 
Join Date: Dec 2015
Location: Dallas, Texas
Did you check his iron level? Anemic? Blood report may help. We watch it very closely for our 14 year old since he had similar symptoms (playing after soccer).

Good luck...
03-28-2018, 06:55 PM   #9
xmdmom
Senior Member
I wanted to say that my young adult son has complained of fatigue and brain fog post remicade; he appears to be in remission per labs, weight, lack of significant gi symptoms.
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