Remicade + Immunomodulator - your experience please

[cassimw]

My 14 year old daughter was just diagnosed with Crohn's and she has a fistula. She is currently on an Ensure-only diet (do you call that EEN?) and feeling good. Her doctor wants to treat with Remicade and an immunomodulator. Has your child had this combination of medications? If so, what was his experience? Pros/cons, side effects, etc. It is possible we may just do Remicade for now. Does anyone have any thoughts on either approach?

 

[pdx]

My daughter is on Remicade + methotrexate (MTX). I can't remember the reasoning now, but her doctor wanted her to do Remicade alone for the first few months, and then add the MTX. Studies have shown that adding the immunomodulator increases the time that the biologic can be used. And since there aren't that many medicines approved for pediatric Crohn's, you really want to maximize the time that you can use them. We also found that my daughter's symptoms improved soon after she added the MTX, and she doesn't have any problematic side effects from it. So we're fans of the combo therapy here.

I'm glad that the EEN is helping your daughter. It really helped my daughter too, and I just wish we had started it right at diagnosis, instead of waiting until her condition deteriorated.

Good luck with everything. It's very overwhelming at first, especially as you have to make all these treatment decisions, but it gets easier when you see your child getting better.

 

[FrozenGirl]

I have done both Remicade and Imuran as well as Remi plus Methotrexate. Imuran and Remi were the closest I ever got to remission but then we found out I am very sensitive to it and it dropped my white blood counts so I stopped. Currently on Methotrexate plus Remi and it works decent though i have some nausea bug it's only once a week and if it's really bad you can get meds for the nausea.

I have also tried just Remicade but it wasn't enough for me.

 

[crohnsinct]

Combo therapy here as well. O has been on Remicade for 4 years and added Mtx 3 years ago. Combo is popular to increase the amountof time that he biologic can be used...it helps with not building antibodies.

Is she going to do injections or oral dosing of Mtx. When in acute inflammation docs sometimes prefer injections as it is better absorbed and then you can switch to oral. The injections are pretty easy. You also have less side effects with injections as it doesn't go through the gut.

Some kids have some fatigue the day or two after Mtx dosing, some nausea, some headaches. For both of my girls the first two doses they felt like they were hit by a truck. After that, smooth sailing.

Make sure she takes any folic acid that is prescribed as that helps mitigate the side effects and Mtx is a folate antagonist. Honestly both of my girls take mtx orally now and neither one has experienced any side effects since the third dose. Everyone is different though. Oh yeah, and our doc prescribed Zofran for nausea as needed but neither girl ever took it. Some people increase their folic acid if they have trouble and Maya's daughter took a rescue drug...starts with L. Most kids take it at night right before they go to bed so they sleep through the worst of it...also take it on Friday so they don't have to go to school feeling crummy.

I didn't mention the side effects to my kids as you know the power of suggestion!

We are big Remicade fans here...no side effects (other than the stupid psoriasis) and no increased infections or illnesses either...just a nice healthy colon, lots of weight gain and growth!

 

[Clash]

When first dxed my son was started on remicade, it took care of all his symptoms but his fc test results were still high so we added mtx. He remained on that combo for a little over 2 years, I guess.

He is now on Humira and mtx.

With mtx he started out with the oral med but then switched to the injection.

C's disease is aggressive and between the biologics he had to have a small bowel resection. When he started back on his remicade he developed antibodies hence the move to humira.

 

[Maya142]

My daughter has also been on Combo therapy. We've tried MANY different combos: Remicade and MTX, Humira and MTX, Remicade and Imuran, Humira and Sulfasalazine, Simponi and Imuran, Simponi and Arava and so on!

M did have a lot of trouble with MTX but most kids tolerate it just fine. She got very nauseous and dizzy with it. She was given Zofran, which helped and Folic acid every day.

She was also given a rescue drug - Leucovorin. It's folinic acid and actually reverse the effect of the MTX, to some degree. It is usually used in cancer patients who take much higher doses of MTX, but M had such bad side effects that we tried it. It seems like rheumatologists prescribe it more than GI's though. Again, I want to emphasize that M is an extreme case - she was in bed for two days every week after MTX - BUT most kids really have no troulbe with it. My older daughter is on it too and she some mild nausea and fatigue but is basically we fine.

We found shots worked better for my girls vs. the pills. They had less nausea with the shots.

With Imuran, M had mild nausea that went away after a week or so. No other real side effects.

NO side effects with biologics. Both my girls actually liked the Remicade infusions because they got the chance to miss school, relax and watch TV. They were both a little tired the day after Remicade, but not all kids are. No increase in infections or anything like that.

Good luck! Let us know what you decide!

 

[CrohnsKidMom]

My son was on methotrexate injections alone, but when that failed they started Remicade. After the first Remicade infusion we did one more MTX injection, then switched to a lower dose, oral MTX. The oral MTX is just to prevent antibodies to the Remicade. Our GI never prescribes Remicade alone and couples it with MTX for boys, and imuran for girls. My son also gets a small amount of steroids in his IV 30 mins prior to the Remicade. I assume that is standard, and apparently studies have shown that the body better receives the Remicade if steroids are administered just prior. As a note, my son had quite a bit of nausea with the MTX injections, but no side effects with the lower, oral dose. And thankfully, no major side effects with the Remicade. Thinking of you as you make these decisions!

 

[my little penguin]

DS is on humira plus mtx with no real issues for the past 3 years
He was on remicade alone and reacted after 8 months.
Not sure if adding mtx would have stopped that.

Good luck

 

[Farmwife]

My 6 year old is on Remicade and Imuran now ( was on sulfasalazine and Mtx but wasn't working).
No big issues after a year.
She also tried Humira but it wasn't enough at the time.

Hugs

 

[malorymug]

My 15 yo boy started on Remicade + MTX last January. He has had no side effects and he gets sick less than the rest of the family. The infusions are a nice break from his regular life and the infusion center is a fun pampering place. But, it isn't magic for us. He is still struggling with weight, puberty, and fatigue. He isn't as sick as he was before, but not magic for him, I'm sad to say.

Remicade is definitely an improvement from his prior medication. He was put on 6mp at diagnosis for 9 months but he continued to lose weight on 6mp.

Best of luck with your decisions. These aren't easy ones.

 

[Jmrogers4]

Remicade only here, GI usually does a Remicade/methotrexate combo but my son had a bad reaction to methotrexate. It's worked well for us for the past couple of years.

 

[cassimw]

I just want you all to know that I have read your responses and deeply appreciate your sharing your experiences and thoughts with me. Your words of encouragement mean a lot as well. I'll continue to check this thread in case anyone else has any thoughts on this topic. Thank you all so much.

 

[Kero]

Thank you for this thread! Great info here. I will be on Imuran and Remicade.

 

[Dar]

My son (19) was diagnosed with Crohn's in August 2015. He was put on Pentasa and soon after Imrun before starting his Remicade. He had been told that Pentasa does not really do anything (which makes me wonder why he would be put on it). He was having up to 9 incidents of bloody diarrhea each day and it basically stopped soon after his first remicade treatment. However, when the Pentasa was removed six weeks later his symptoms immediately returned. Now he is back with Imrun, Pentasa and Remicade and all is well again. His GI was amazed (since it is not supposed to do anything) so we will keep him on these three for as long as it works.
_________________
Pentasa
Remicade
Imrun
Pro Biotics
Ferrous Sulfate

 

[my little penguin]

Pentasa does very little as a monotherapy
That much has been proven
But it can boost thing slightly ...
As an adjunct therapy
DS was in the sister drug
Asacol plus remicade for a long time

 

[Mehita]

My son (19) was diagnosed with Crohn's in August 2015. He was put on Pentasa and soon after Imrun before starting his Remicade. He had been told that Pentasa does not really do anything (which makes me wonder why he would be put on it).

Maybe for insurance reasons? I know my son had to do the bottom up approach and fail a med before they'd let us try the next one in line. A real bummer since Pentasa is so expensive!

Glad to hear he has a combo that's working for him!