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18 year old son on Infliximab not well

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Crohn's Disease
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Posted 3/26/2018 10:12 AM (GMT 0)
My son is 18. He was diagnosed with Crohn's disease nearly 2 years ago in his small intestine. He was put on 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?
Posted 3/26/2018 11:53 AM (GMT 0)
Your son should be having regular blood tests as part of his Infliximab regime. Ask for a copy of the most recent results and make sure he's not anaemic. If B12 isn't on there, ask for a B12 test too, as that's often low in Crohn's; B12 deficiency can cause brain fog and fatigue.

If iron, B12, and everything else is normal, then how did the consultant decide the Crohn's wasn't active? Did he do any tests?

Finally, your son could be having a lupus-like reaction, which is basically a delayed autoimmune reaction to the Infliximab. It's fairly rare but it does happen and the GI ought to be aware of the possibility. Here is an article about it, if you want to know more:

/www.lupusuk.org.uk/medical/gp-guide/diagnosis-of-lupus/associated-illnesses/drug-induced-lupus/

Good luck and hope your son feels better soon.
Posted 3/26/2018 1:29 PM (GMT 0)
One thing that might help if the infliximab is causing reactions during an infusion is to do steroids and benadryl right before an infusion. Or add in something like imuran or methotrexate (although for a young man, those might be a last resort).
Posted 3/26/2018 2:26 PM (GMT 0)
RoseH, Scifi has given you some great information to check out. If the gi has checked for antibodies recently & the levels are ok, then ask for the labs Scifi mentioned. If the gi acts like he doesn't want to order the test checking his vitamin levels, then take him to his primary care dr, he can order the labs.

I was on the same drug for 3 1/2 years. I agree a lot of this sounds like a reaction. I had a reaction & was given IV Benadryl & Soluable Medrol & never had another problem. My gi also had me on Imuran as he said it helped with not developing antibodies & helped the Remicade work. My infusion were done every 4 weeks.

Take care.
Posted 3/26/2018 6:34 PM (GMT 0)
The nurse has me take Tylenol and Benadryl prior to my infusions and I've not had any negative reactions. Plus, I can't get the infusion unless I have all sorts of labs done. CBC, WBC, electrolyte, liver function panel, and some others..
Posted 3/27/2018 3:15 AM (GMT 0)
RoseH,

I take Remicade. The amount and timing has changed many times during the last 3 years. The trough level at testing helps us ensure I am receiving the correct dosage.

When I get really tired it is usually a vitamin problem. For me...if my vitamin D, calcium, potassium, or B vitamins drop I start dragging.

I agree with all of the advice above.

I hope he feels better soon!
Clo
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