Need Advice - 14 year old

[Rforres]

Hi. My child was diagnosed with Ulcerative colitis in May.

Here is his story: In May, he started feeling ill and we thought it was a stomach virus. We took him to the pediatrician and he wasn't alarmed at first. After 2 weeks and him losing 30 lbs, he was admitted into the hospital. He was put on steroids - which seemed to help. We were discharged and after 3 weeks he was ill again. This time his hemoglobin dropped to 3.1. He was admitted again and placed on Remicade and 6MP. Since The hospital admission in June, he has received 2 Remicade treatments and was feeling good.

About 4 weeks ago, he started with blood in his stool again. This was about 2 weeks after his 3rd Remicade treatment. GI doctor ordered bloodwork and hemoglobin was 8.7. Also, he ordered the Anser test so we could see what the drug levels were. These results came back showing 0 Remicade in his system. On 9/11, he had the 4th Remicade treatment and on 9/18 he had another blood transfusion. This week he has been feeling better.

Here is where I need advice- I emailed the GI doctor to find out what the next steps should be. Do we continue on Remicade? If so, how much, how often and for how long. I'm worried about the side effects.

This was his response:
I am not sure what to make of the remicade level. It honestly makes zero sense. To my knowledge (and I've asked others), nobody hypermetabolizes remicade and there were no antibodies to remicade that would lower the level. Again, I cant explain this other than....the possibility exists...there was a pharmacy error and no remicade was in the solution. There may be other explanations (e.g., lab error at Prometheus, where the lab test was sent) but i dont know what they would be.

So let's see how this last infusion goes - how long it lasts - and take things from there.


As a mom, I don't want to wait until my son is sick again. Any words of advice???

 

[Mehita]

Sorry, no advice since we've never done Remicade here, but I'm pretty sure there are some kids who've tested and had no Remicade in their system.

Tagging Clash...?

 

[Patricia56]

You could seek a 2nd opinion but it may not happen for several weeks.

My guess, to be perfectly honest, is that you are probably facing colectomy in the near future if the Remicade doesn't work.

Some kids are like this - they just have severe UC that resists treatment from the start. They are so much better after they've had their colon removed you would not believe it. Many parents and kids say they wish they had done it sooner. Unlike Crohn's you are essentially cured once your colon is removed.

I'm so sorry this is happening to your family. I hope the Remicade holds this time.

And yes, I'm afraid that, except for seeking a 2nd opinion at someplace like CHOP, you will have to wait and hope.And make sure the doctor has ruled out Crohn's as this would be a potential reason to avoid colectomy.

 

[Clash]

Sorry, we haven't had the trouble with Remicade levels. I'm going to tag Tesscorm, her son had low levels of Remicade at some point, but honestly I think it was further out and he has CD and not UC.

I hope you find some answers soon!!

 

[Tesscorm]

My son started remicade in February, he had the three loading doses (so, if memory serves me, first dose, 2nd two weeks later and 3rd four weeks after), after the 3 loading doses, he started on an 8 week schedule. June 5 was his first infusion after waiting 8 weeks. Just before this infusion, they tested his remicade levels and levels of both remicade and antibodies came back at zero. Our GI moved him to a 6 week schedule - his next one infusion is coming up in two weeks (which will be second one at the 6-week schedule) and we are testing for levels again.

I don't know about hypermetabolizing or why it wears out sooner in some people but, it seems to be very common to shorten the schedule from 8 weeks to 6 or even 5 weeks.

Also, my son's dose is 5mg/kg. I believe this is a typical dose, however, I have also seen the dose increased to 10mg/kg when necessary.

Did your son's GI mention any thought to shortening his infusion schedule or increasing his dose (if he's not at the max yet)?

I also recently re-posted a link to an article that showed increased success with remicade with enteral nutrition was used concurrently. Here's a link to that article (look for post #87)

http://www.crohnsforum.com/showthread.php?t=43002&page=3

Also, although remicade does often work fairly quickly, it doesn't always and, I believe 6MP can take a few months to become therapeutic.

Do read through some of the information on enteral nutrition - while many studies do show greater success with small intestine inflammation, it has helped eliminate inflammation in the large intestine also. Here are two links re EN

http://www.crohnsforum.com/showthread.php?t=36345

http://www.crohnsforum.com/forumdisplay.php?f=161

It's always hard waiting... especially when the 'waiting' means watching your child struggling! :ghug: I'm glad your son is feeling better, perhaps it's just taking time for the meds to kick in but the improvement is starting...???, in the meantime, I would start keeping a journal of symptoms to help when you follow-up with the GI. And, if it were me, I'd certainly contact the GI if symptoms were worsening over the 8 weeks until the next infusion.

:ghug:

 

[CarolinAlaska]

I think the tests need to be repeated after this infusion to see if they repeat themselves...

 

[Niks]

Hugs to you. :ghug:

If it really is an error, surely retesting would be the way to go as suggested.

Good luck xx

 

[my little penguin]

DS 'a system would go through remicade quickly for whatever reason
No antibodies .
We had to up the dose and frequency. He was at 7.5 mg/kg and every six weeks.
He was having reactions ( delayed skin type-rashes skin peeling blisters)
Starting after the fourth or fifth infusion.

He ended up with a serious reaction twice this year even with iv steriods so no more remicade.

Hope a second opinion helps

 

[Patricia56]

How are things going?