Experience needed - son with UC - failed Remicade?

[Tesj]

Hi,

I'm new to this forum (just filled out my personal story page).



Essentially, my 10 yr old son was diagnosed last december with UC (left colon and rectum), after starting symptoms in Aug 15. He tried Asacol, Salofalk with small improvement, but then seemed to have reached a plateau (far for remission) and went back down. Was put on oral Prednisone with no success. Then Prednisone in IV, which works a bit, but again not enough to put into remission. Started Remicade 7.5mg/kg and had the 3 loading doses, seemed to work only for a week for the first 2 and then nothing after the 3rd one.
Was hospitalized for 2 weeks and a half not long ago and put on iv prednisone again. Had a colonoscopy which showed that US has now extended to transverse colon. Rectum is very bad.

Now trying Remicade at 10 mg/kg. First dose was a week and a half ago with minimal improvement since, and going downhill again. Was supposed to be every 4 weeks at that dosage, with 1 possibility of having an earlier (and last?) dose.


He's still on oral prednisone for another 2 weeks before tapering down and the plan was to add oral Methotrexate to the Remicade (once off the oral prednisone) to help Remicade. But now I'm afraid the Remicade won't work at all



The Dr did mention that he could have build antibodies to the Remicade (awaiting results from 1 blood test he had taken just before last treatment) and that if he did have antibodies we could try Humira....with also the plan to add Methotrexate once prednisone is tapered off. But what if he doesn't have antibodies to Remciade and it's just Remicade not working?



I'm a bit discouraged and don't see the end of it. It's been non-stop since August. I'm horribly scared of the surgery.



I would really like to hear some of your kids experiences with UC and their treatments (failed and success) and/or surgeries.



Anybody failed Remicade but had success with Humira?


What about Entyvio? I heard some kids could get permission to try it even if not yet approved in pediatrics.



I'm so scraed

 

[Maya142]

Remicade can take some time to work -- hang in there!! It took four infusions for my daughter and she needed 10 mg/kg every 4-5 weeks too. Some kids have even been put on higher doses.

Having MTX on board could prevent antibodies if he doesn't already have them. It could also give Remicade the "boost" that he needs.

They are using Entyvio at our Children's hospital (in the US). Since it's not approved for kids yet, they are mostly using it on teenagers.

If he does have antibodies to Remicade, then there are other anti-TNFs: Humira, Cimzia and Simponi. Humira would be used first.

Have you considered try Exclusive Enteral Nutrition (EEN) to get him into remission?

I will tag some parents:
Clash
crohnsinct
mylittlepenguin
Tesscorm
Pilgrim
kimmidwife
Mehita

 

[pdx]

My daughter also took a long time to respond to Remicade (about 4 months), but it's working well for her now. Maya mentioned EEN; EEN worked really well for my daughter while she waited for Remicade to kick in, but I think it's used more for Crohn's than for UC. That said, I have heard stories of kids with UC who used EEN successfully.

I really hope that your son starts responding to his treatment soon!

 

[Tesj]

Thanks Maya and pdx

I was also told that EEN was done for Crohn's and not UC (and that seems to be the consensus at our hospital).

I really hope all he needs is time for the Remicade to kick in, but unfortunately the doctors seem to think it should have worked already.....

And I find they are very quick to be talking about surgery :S

That scares me a lot.

He has an aggresive type of UC i guess

 

[Maya142]

It is typically done for Crohn's but can be done for UC. It may or may not work, but that's the case for everything!

There's one parent who's daughter has Crohn's colitis (Crohn's in the colon) and did very well on it. Hopefully she will chime in soon.

 

[crohnsinct]

Hi there. I am sorry you guys are having such a rough go of it.

My daughter has Crohns with all colonic and rectal involvement so very UC like.

She was put right on Remicade and Prednisone. Prednisone worked for her but every time we tried to taper she would flare. She was declared steroid dependent.

We were told we had to add Methotrexate (for disease control, at the time they weren't using mtx for the prevention of antibodies). We asked about EEN instead and were told it was of limited use for colonic involvement and had better success with small bowel disease. My daughter's very good friend was dx'd with UC at the same time and was also not responding to Remicade. She also asked about EEN. Both families opted for EEN and it worked for both girls. Her friend went into remission right away and has stayed there ever since. It took my daughter 6 months. For both girls Remicade just couldn't do the heavy lifting without some assistance. WE also both later added mtx but for the benefit of antibody suppression.

Remicade is an anti tnf. For IBD tnf is just one of the drivers of disease activity. It could be that for your son tnf is not the primary driver of disease and he may need to switch class of drug to something like Entyvio which is an anti adhesion drug.

My nephew with Crohns Colitis, failed Remicade miserably. Went on to try Humira and failed that as well. He was wasting away to nothing. No energy, feeling miserable. He was very close to deciding to have a total colectomy but then Entyvio was approved and he tried that. It took a long time to work but he is doing fabulously well on it now.

My concern would be that you are not even getting a week of relief from the Remicade so I would think either he is building antibodies, they are not using a high enough dose (my daughter was on 10mg/kg every 5 weeks at dx) or it is just the wrong drug. I am assuming they checked his drug levels when they pulled blood for antibody testing. Kids with severe disease sop up the drug and actually end up pooping it out. So they need a much higher dose at the beginning than say the 5mg/kg dose for maintenance of remission.

Hang in there. It takes a long time to figure it all out but it sounds like you have a good team working with you. We are here for any questions or a good old fashioned vent session whenever you need.