Remicade not working anymore?

[kernelmom3]

My 19 year old son was diagnosed with Crohn’s almost 5 years ago and immediately started on Remicade. He’s 5 mg/kg every 8 weeks and it’s been working wonderfully. Last week he called me from college to say he’d been feeling really sick for two days but he thought it was the flu. I took him to the ER and fast forward he has an abscess and possibly a fistula. They drained the abscess and he has had the drain for the last week. They are still giving him IV antibiotics and will switch to oral soon and do a fistulagram (?) tomorrow. CRP came down from 143 to 24 and they just told us his Remicade level is normal with no antibodies.

 

[Scipio]

This sometimes happens. Developing anti-drug antibodies is the most common cause for loss of response to biologics, but it's not the only one. Sometimes for no obvious reason the drug just stops working for a given patient.

Fortunately, there are other options to try: other anti-TNFs such as Humira, Golimumab, and Cimzia, plus others that are not anti-TNFs such as Entyvio and Stelara.

 

[Lisa]

Some things to consider - the 5mg/kg is a very low dose - that is what I am on too.....has he increased in weight so that his dosage needs to be adjusted? His levels may be 'ok' - but are they middle of the road ok, low/high etc.....

This is from my bloodwork results 4/18 -

In the presence of serum anti-infliximab antibodies, the
infliximab drug level reflects the antibody-unbound (free)
fraction of infliximab in serum.
Quantitation Limit: <0.4 ug/mL
Results of 0.4 or higher indicate detection of Infliximab.
COMMENTS:
- The optimal drug concentration depends upon patient-
specific factors including the disease and desired
therapeutic endpoint.
- Target trough ranges of 3 to 7 ug/mL and 5 to 10 ug/mL
have been studied in inflammatory bowel disease (1,2).
- In severe CD, higher trough levels (>10 ug/mL) may be
necessary to achieve fistula healing (3).
- In rheumatoid arthritis, EULAR responders had higher
trough levels (median 3.6 ug/mL) than non-responders
(0.5 ug/mL) (4).

 

[kernelmom3]

His Remicade level was 17.4 and that’s at about 4-5 weeks post infusion and no antibodies so they say the it’s not a matter of going up in dose or frequency (he goes every 8 weeks). They now want to do another colonoscopy in a few weeks and check some tissue samples and test for CMV. I’m freaked out because the one and only colonoscopy he’s had (when they diagnosed him) they perforated his intestine!!

 

[my little penguin]

He hasn’t had a scope in 5 years ???
Can you get a second opinion ?
Have they done MRE / pill can since ?

 

[kernelmom3]

No scope since 8/2014. He just has his infusions every 8 weeks and labs every time he has an infusion. He’s has his Remicade levels checked twice before this as well. Also sees the doc every 6 months. Doc was going to scope him or do MRE in August 2019 at the 5 year mark. No pill cam...I guess they don’t like to use them because it may not take enough pictures or take pictures of the places they want to see.

 

[my little penguin]

Standard of care for kids
Is upper/lower scope every 1-2 years
Pill can and MRE
You need the complete picture
Not just one or the other
Please seek a second opinion

 

[my little penguin]

Tagging maya142
Pdx

 

[pdx]

Sorry to hear about all that's going on with your son. It does seem possible that Remicade has lost its effectiveness for him. One caveat though is that his levels weren't taken after 8 weeks (that is, just before his next infusion), so it's still possible that his levels are too low by the time he gets his infusion. If that were the case, then increasing the infusion frequency might help.

I think the scope is a good idea, and I agree with MLP that it would be good to get a look at his small intestine too, either with an MRE or pillcam.

Good luck with figuring out what's going on and I hope that he recovers quickly.

 

[crohnsinct]

While I also have heard that "standard of care" for kids is very year or every other year, my girls have seen three different pediatricGI's and none of them are quick to scope. First guru doc scoped one daughter three years after dx and then 2 years after that but because of increasing labs and symptoms. Second daughter he scoped after two years. Two new GI's after we moved weren't very interested in scooping and one of my daughters has disease activity that is driving us a little batty. Just weird.

I thought the same as PDX, that maybe it drops after the 4 week point but 17 is pretty high at the 4 week mark. I can't imagine it drops that much in the next 4 weeks to allow inflammation to return.

Think a scope or MRE is a good idea but geez do I understand your hesitation. I would be nervous also. But the chances are slim so here's hoping he doesn't fall into that slim chance again.
:ghug:

 

[kernelmom3]

Thank you all so much for the input. He’s home now with his drain and we go back next week to see if he can have it taken out. They told us he definitely has a fistula so they left the drain in the abscess in hopes that it would help the oral antibiotic get to it and shrink/heal it. Then they can give him Remicade for the fistula. They then plan to bump him to 10mg of Remicade every 4 weeks and try to back him up to 10mg every 8 weeks very slowly.

 

[Maya142]

I'm glad they're increasing the frequency of Remicade. I am also surprised they did levels at 4 weeks when he's on an 8 week schedule - that makes no sense to me!! They have no idea what his levels are at 8 weeks then - they could easily be 0!

But I agree that 10 mg/kg every 4 week is an option to try. Hopefully it will be enough to control his disease. But it is also possible that he is just losing response to Remicade.

I think unfortunately, it's a "wait and see" situation.

Our GI has scoped every 2 years or so. My daughter has had 4 scopes, I think, in 6 years. She was happy to go 3-4 years if a child is really stable and has been for a long time. But otherwise, imaging is done more frequently.

We were also told that at the 8 year mark, we'd start scoping every year for colon cancer. No idea if that is still what's done...

 

[Lady Organic]

Hi kernelmom3, may I ask what happened when they perforated the colon of your son? How did it happened? and how did he recover from it? Did he have to have surgery?
A nurse told me once a good amount of perforations occur to people with diverticulitis (the The GI pushes the scope through a diverticul, thinking and mistaking it for a colonic curve.

 

[kernelmom3]

They hadn’t diagnosed him yet and he was really inflamed. He also didn’t go to the bathroom much even with the prep the night before. They think the combination of how inflamed he was and how much they had to flush to get through the colon a tiny perforation happened but can’t be sure.