When Remicade No Longer Works?

[RAISINGMI]

Greetings All!

I'm new to this forum, but not new to Crohn's, unfortunately. My 13y/o son (with 14th b-day coming up!) was diagnosed at age 8 with severe Crohn's. He's been on Remicade since his diagnosis and it's mostly done a good job keeping the Crohn's under control. For almost the past year, however, he's been having flares every cycle in the few weeks before his next treatment. Last fall the doctor doubled his dose, and we thought was doing the trick. However, the last 3 cycles he's been flaring at week 5 or so.

Last week we did an "emergency" infusion almost 3 weeks early because he was having pain and diarrhea, and the doctor ordered a test to determine his Remicade level and whether his body is making antibodies to the Remicade.

Don't have the test results yet, but has anyone had experience with Remicade eventually not working? And what happens next? I'm so concerned that if Remicade is kind of the "last resort" drug that switching him to something else will not be effective. I also don't want to take him off Remicade unless we are absolutely sure it's necessary since it may not work again after going off of it. I don't want my son to face surgery or loss of intestines.

Any thoughts? Looking for info before talking again with the doctor. Thanks!!

 

[Tenacity]

Hi there,

Sorry to hear about your concern - I can imagine how worried you must feel.

What other meds is he on?

I would suggest starting him on one of the other stronger meds to run concurrently with the Remicade. My suggestion would be to try a medication like LDN as soon as possible. We have a section in our treatment forum about LDN.

Is he getting the maximum dose of Remicade now?

Has he ever been on an elemental diet - I would strongly suggest that you give it a try.

I hope he feels better soon.

 

[Jennifer]

Hi RAISINGMI and welcome to the forum!

Sorry to hear about your son and his current flare. I'm sorry I don't know much about Remicade but there are many different meds out there. What other meds had he tried in the past? Is he not taking a steroid for inflammation? As mentioned taking more than one med may be helpful.

Do you know how much and where he's being affected? I know surgery is scary but for many it has kick started remission. If it does come to that, know that he'll be ok and we're all here for him and his family.

Might want to also check out the Parents of Kids section of the forum here: http://www.crohnsforum.com/forumdisplay.php?f=49 You'll find other parents there who may also have some answers.

 

[RAISINGMI]

Tenacity - he's on no other meds, other than a multi-vitamin. He's been getting the maximum dose, I believe, for most of the past year. Right now we're going to do his next infusion in 5 weeks instead of 8. I don't know what LDN is, but I'll look into it. We've discussed diet, but he's a tween and won't really commit to a diet change.

Crabby - he's not on a steroid. When he was initially diagnosed 5+ years ago, he was on prednisone as we started he Remicade, but he hasn't been on it since. The remicade, until now, has worked really well at keeping the Crohn's under control. I'm going by memory here (too lazy to go look up his medical records at the moment!) but when he was diagnosed he had bleeding ulcers almost everywhere -- his esophagus, stomach, duodenum, intestines; I seem to recall he had thickening of either the ascending or descending colon ... that's all i can remember at the moment.

I have definitely checked out the parents forum, I didn't post there because this seemed more of a "medication/treatment" question than something specific to kids ... at this point I'm just praying that his bloodwork does not show antibodies and that there's a good option for getting his disease back under control.

THANKS!

 

[Becky]

I have been on remicade for 5 yrs. At first it was every 8 weeks. THen I started flaring at week 7 so my GI put me on every 6wks instead. I was still having issues with that so now I am still on every 6 wks and I also take 6mp. Like others have said I would see about adding another drug with the remicade.

Good luck

 

[chrisnsteph1022]

It's not working for me, either (I'm on the max dose, along with imuran and lialda). I'm seeing my GI today to find out what the next step is. I fear it may be time for clinical trials.

 

[RAISINGMI]

Thanks Becky. Good luck Stephanie!

 

[moogie]

My mother would so much relate to you i'm sure. I was DX when I was 12 years old.

I'm on a full dose 6 weeks treatment. If this does not stabilise my GI says he will have to add other medications but he does not want to. I guess the side effect might be bad...

Good luck.

chrisnsteph1022 I'm sorry to hear it's not working for you. I know right at the start you were doing better.

Stay strong!

 

[chrisnsteph1022]

Oh, it's working. I'm MUCH improved from before I started it. It's just not getting me quite into remission. We added daily immodium and VSL3, so we'll see how that does.

 

[moogie]

That's good to hear then.

Lucky you for Imodium my doctor says to stay away from that... I have D regularly