MRE results after 4 Remicade doses - what should I think of this?

[cassimw]

Hi everyone,

My 15 y.o. daughter just had a repeat MRE after having had 4 Remicade doses (5th is tomorrow). She is also on 6-MP and partial EN diet. She had an intestinal fistula, which seems to have either resolved or has significantly reduced in size (they can see a shadow but aren't sure if it's gone or not). So that's good news! :dusty:

BUT we were told that there is still a lot of active inflammation and mild dilation & narrowing at the terminal ileum. (I wrote that down when I was talking to the doctor, but now I'm confused, because dilation and narrowing seem to be contradictory to me - is there something I'm not understanding? Or maybe I wrote something down wrong...)

She is mostly asymptomatic for now. Occasionally she will have some pain, but not usually. And if she eats too much food on a given day, she can feel nauseated and throw up, but this is also not common. The doctor she said we would continue to do what we're doing and do a repeat MRE probably around August.

Questions:

(1) Should I be concerned about continuing 6-MP for a year? Originally we agreed to 6 months.

(2) Does it make sense that there is both dilation AND narrowing?

(3) I was hoping to hear "remission", but alas! What should I think of these results? Does it sound like the treatment is working? Should I be inquiring about other options?

(4) PAW started off with EEN (drinking about 2,100 - 2,400 calories a day from Ensure) for about 3 months. Since then, for the last 3 months, she has been drinking about 1,400 calories from Ensure and the rest is a normal diet (minus nuts and popcorn and reduced dairy) - should we consider other dietary changes?

Thanks in advance all!
Cassi

 

[Tesscorm]

It's good news that there is some improvement! When my son was diagnosed, I was told it takes quite a while for complete healing; hopefully, just a bit more time is needed and August MRE will be all good! :hug:

Narrowing and dilation - yes, they go hand in hand. What it means is the narrowing is causing a back-up of material passing through the bowel, the backed up material accumulated behind the narrowing and dilates/expands that area.

Diet - My son hasn't required many diet restrictions (other than nuts and popcorn too) but we also very much limit seeds (ie tomato seeds in sauce, seeds on bread, etc.). I would also watch if fibre is a problem. My son does not eat lots of fruits or veggies so, by his own taste preferances (picky eater! ), he does not have lots of fibre in his diet. What we were told to watch for/limit were fruit skins and membranes (skin around orange segments).

You can also try some anti-inflammatory foods (alas, my son didn't like any of them!) but I tried coconut oil, papaya.. (sorry, i've forgotten the others).

Other treatments - it does seem the current treatment is bringing some improvement. But, perhaps, more time is needed. You need to be careful about giving up on treatments too early... there are a limited number of treatment options and, with some, once you discontinue, you cannot restart (ie stopping remicade very often results in antibody formation which will preclude your daughter from using it again).

 

[cassimw]

Thanks so much, Tess! Your explanation of narrowing & dilation makes so much sense!

 

[pdx]

I can understand your frustration, but I think it sounds like things are going pretty well. The fact that the fistula is gone, or almost gone, means that things are going in the right direction. My daughter still had lots of inflammation after her 4th infusion, but she's doing great now, a year later.

The one thing I might ask about is doing a Remicade levels test, just to see if you might need to increase the dose or frequency to get a better response. I can't remember if you've already done that recently?

As for continuing the 6MP for longer than 6 months, I would just keep researching this, and talking to your doctor about it. It's hard, because there just isn't a lot of conclusive evidence about how long to continue combo therapy. (Notice how many questions on this forum are about combo therapy recently!)

 

[cassimw]

Thanks, PDX! I'm not exactly frustrated. I'm pretty thrilled that things seem to be moving in the right direction and cautiously optimistic. I just want to keep things in the right perspective and try to make sure we're making all the right decisions (aren't we all?!). This group has so much collective wisdom! I thought -- if it doesn't sound right that there's a lot of inflammation still, you guys would let me know. It's really helpful to know to know, for instance, that your daughter is doing so well after a year of Remicade. Gives me lots of hope!

The doctor asked for Remicade levels to be drawn at the last infusion, and something (I'm unclear as to what) happened with the labs and they were either not drawn or not run or lost or something. I was NOT happy, to say the least. They are drawing that tomorrow before the infusion, so that will be helpful information.

Thanks so much for your post!

 

[cassimw]

UPDATE: We got Remicade tests back...

(1) There was no remicade in PAW's system when they drew her blood just before her last infusion. I guess that's why she started getting stomach aches about a week or two before her infusion. Guess that means it's helping her symptoms, so that's good. They are going to do her next infusion at 7 weeks instead of 8 and up her dosage.

(2) They discovered a small amount of antibodies (post 4th treatment). She's also on 6-MP. How concerned do you think we should be about this? Really appreciate feedback on this one. Thanks!

 

[Maya142]

Honestly, no one can really say. Some kids have allergic reactions to Remicade without antibodies, others don't react even with antibodies. Sometimes Remicade continues to work even though kids have antibodies and other times it stops working if they have antibodies.

The science is still a bit fuzzy.

Remicade stopped working for both my girls but tests showed no antibodies.

If the number is low and she's still responding, I wouldn't worry too much. It sounds like she just needs more Remicade so I'm glad they are increasing the dose and frequency. Hopefully that will help a lot.

 

[pdx]

I agree with what Maya said above. I know of a couple kids who developed antibodies, but were able to continue on Remicade using a higher dose. I would definitely plan to stay on the 6-MP for a while, since that may also help prevent the formation of more antibodies. Good luck--I hope the new dose is just what your daughter needs!

 

[Sascot]

Good luck with the new schedule, hope it helps

 

[cassimw]

Thanks Maya, pdx and Sascot! All very helpful and encouraging!

 

[my little penguin]

Ds is one of those kids who reacted not once but twice despite no antibodies
Per his dermo they only test for specfic known antibodies not all of them

Either way both reactions were mild
Second one he was on Iv solumedrol during the infusion

Good luck and let us know how things go

 

[cassimw]

Ds is one of those kids who reacted not once but twice despite no antibodies
Per his dermo they only test for specfic known antibodies not all of them

Either way both reactions were mild
Second one he was on Iv solumedrol during the infusion

Good luck and let us know how things go[/QUOTE

Wait, does having antibodies mean you will likely have a reaction to the meds? I thought it meant the meds were losing efficacy?

 

[Maya142]

Not necessarily. Some kids who react don't have antibodies, while other kids who react do have them.

I believe antibodies are associated with infusion reactions.

An average of 3.9 infusions (range, 1-17) per patient was administered over an average of 10 months. Antibodies against infliximab were detected in 61% of patients. An antibody concentration of > 8.0 g/ml before an infusion predicted a shorter duration of response (35 days, compared to 71 days in patients with antibody concentrations < 8.0 g/ml, p < .001), and a higher risk of infusion reactions (relative risk 2.4, p < .001). Infliximab concentrations were significantly lower at 4 weeks in patients with infusion reactions compared to those without (median, 1.2 vs 14.1 g/ml, p < .001). Patients with infusions reactions had a shorter duration of response than those without infusion reactions (38.5 vs 65 dys, p < .001). Concomitant immunosuppressive therapy was predictive of low titers of antibodies (p < .001) and high concentrations of infliximab 4 weeks after an infusion (p < .001).

Patients who develop anti-infliximab antibodies are at higher risk for developing infusion reactions, and a reduced duration of response, to treatment with infliximab. Co-treatment with an immunosuppressive drug(s) can suppress the antibody response and prolong the clinical response to infliximab.

 

[kimmidwife]

Antibodies might mean a reaction but they may not as well. Does your doctor premedicate with Benadryl and steroids prior to the infusion? If not I would ask about that.

 

[cassimw]

Antibodies might mean a reaction but they may not as well. Does your doctor premedicate with Benadryl and steroids prior to the infusion? If not I would ask about that.

Yes, but thanks for pointing that out, just in case!

 

[cassimw]

Not necessarily. Some kids who react don't have antibodies, while other kids who react do have them.

I believe antibodies are associated with infusion reactions.

Interesting stuff, thanks!