Remicade or Humira?

[Brady's Dad]

My son, who's 9, is failing on 6-mp after a year on it, so our physician wants us to move on to a biologic. They've given us the choice about which one to start. We're on the fence and looking for advice.

It seems like remicade might be easier in terms of administration (less frequent and less painful) but Humira is quicker and in home, while remicade takes hours for the infusion.

With mouse protein in remicade, it seems like antibodies will build up faster than Humira, but Humira remains a possibility as a follow on drug, while you can't go the other way.

Then there's the complications that seem more frequent with remicade.

All that is to say, totally confused at this point.

Which did you pick, why, and would you do it again or try something different?

 

[my little penguin]

You can go from Humira to remicade without any issues

Ds started remicade first
It can be adjusted more readily for growth and weight changes that occur in kids so they are always getting a dose per kg .
Humira only has two Prefilled dosages so what worked at 25kg may not work as well once they are 49kg kwim
Yes it's hours for the remicade but kids love the pampering and its once every 6-8 weeks .
Vs Humira a painful shot even for adults ( think wasp sting you have to hold in for a minute/serum is extremely painful)
Ds had been getting allergy shots every few weeks since age 4 . Had no issues with normal shots -Humira shots cause painful screams .
Humira shots are every two weeks which means fatigue the day after every two weeks vs every 6-8
Same amount of time -it adds up .

Remicade no more blood draws they get these when they place the iv for the infusion
Humira blood draw trips every two months .
Remicade works in 6 weeks
Humira 3-5 months
Remicade falls under the medical side of your insurance so is covered just like a scope etc...
Humira the prescription side so very high co pay $100's of dollars .
Remicade -remistart program to help
Humira -my Humira to help some
I would start with remicade again in a heartbeat .

 

[my little penguin]

Fwiw my kiddo was 8 when he started remicade
He is 11 now
Good luck

 

[Pilgrim]

Not countering what MLP said, but just our experience:

We chose Humira because we live a many hours from the hospital where the infusions would be done for Remi.

The shot is painful for her but it is over in about 20 seconds. She does have about a half day "hangover" from the shot where, if she were old enough to go to school, I would keep her home from school. By "hangover" I mean just very tired and spacey. If you chose to do the shot on a weekend then that wouldn't be an issue.

We saw results right away - the first week.

Humira is expensive but we have been given a lot of help, financially and paperwork wise, to get coverage in place by the Progress Program (I guess that's the Canadian arm of My Humira).

 

[crohnsinct]

and now you know why MLP has her very own fan club!

She pretty much summed it all up. Our doc didn't give us the choice. He just presented Remicade at dx so that was all I knew.

Our hospital is over an hour away but I still find Remicade very convenient. I especially like the blood draws done at the same time and the fact that the nurses are also watching my daughter. Because you see your child every day, you sometimes don't notice changes in their appearance. A few times the nurses have raised the alert and been spot on. Docs are in the building so if need be they can pop in to check things out and chat.

Good opportunity for the kids to connect with others with disease during infusion.

Lots of flexibility with dosing and schedule.

As you get further along infusion can go as quick as 2 hours start (weigh in, height, chat) to finish.

Good Luck with your decision.

 

[Brady's Dad]

Thanks for the advice. How long does remicade typically remain effective before antibody resistance? I've heard it happens more quickly in kids.

 

[Clash]

It varies and not every child develops antibodies. At my son's infusion center, there are usually 8-12 kids there with him and the majority of them will have been on remi for 2+ years. I've met a number of parents whose kids have been on it through adolescence and on into college.

My son is on combo therapy which is supposed to help with antibodies, so remicade + methotrexate. But some kids do fine on remi w/o the immunosuppressant.

 

[my little penguin]

Antibodies vary
Some kids go years
Others like my kiddo never form antibodies but are so atopic ( he reacts to food drugs bees etc...)
That they still react to remicade or any infusion for that matter
Ds had 8 months on remicade before he reacted
Most kids I know stared years before Ds and still are on it years later .
Some theories use Mtx for he first 6 months to reduce antibody formation
But honestly you can form antibodies to any drug
The risk of allergic reaction is just slightly highe

Ds has been on humira for almost two years .

 

[araceli]

Hello Brady's Dad. No experience with humira, went straight to remicade . 2 years on it without any other medicine, great results and no big issues.
Some private insurances will not cover remicade until you have tried humira. My insurance is that way but since my kid was already on remicade they had to cover it. Sending support your way.

 

[Maya142]

We did Humira before Remicade, but I wish we had done it the opposite way. Both my daughters much preferred Remicade- they liked the chance to relax and watch tv at the infusions. Plus you get bloodwork done at the infusions, so it's one needle stick every 4-8 weeks!

My younger daughter has been on Remicade three separate times. We were worried about antibodies and a reaction, but so far so good. Not every kid develops antibodies.

They did get used to Humira, but it was always very painful.

 

[Brady's Dad]

This is all very helpful. I think we'll try remicade first. You all are a terrific community. Thanks!

 

[Brady's Dad]

My younger daughter has been on Remicade three separate times. We were worried about antibodies and a reaction, but so far so good. Not every kid develops antibodies.

Why did she start and stop it? Did she have to go through the induction phase each time?

 

[awmom]

We also were not given the option to do HUmira. When my son failed 6mp he went straight to remicade. He has been on it for over two years with no issues other than feeling tired a couple of days after the infusion. It is so difficult to make these decisions on behalf of our kids......you've come to the right place to gather info and make the best decision possible.

 

[Clash]

My son started stopped and 're-started remicade. His was due to surgery, the second time around he did have reactions so even though we are fairly certain it isn't due to antibodies we are testing anyway.

Our next med is most likely Humira, I hope it works but I do hate leaving the remicade behind.

 

[Jmrogers4]

My son has been on remicade for a year went from Imuran to LDN back to Imuran and then Remicade. His GI puts most kids on a Mtx/Remi combo to combat antibodies but Jack had a reaction to Mtx so he is on Remi as a mono therapy and doing extremely well. We saw a difference 1/2 way through the first infusion. He looked at me and said he was starving. This from a kid who I had to beg and remind to eat for the last several years. Ate a huge meal after the infusion. He had a headache after that first infusion but no issues since then.

 

[Maya142]

Why did she start and stop it? Did she have to go through the induction phase each time?

This is a looooong story....

My daughter has very aggressive juvenile arthritis. The first time she was put on Remicade, it was before she had been diagnosed with IBD. It didn't do much (was a very low dose) so we switched to Enbrel (used for juvenile arthritis but not IBD). Then 3 months into Enbrel, she was diagnosed with IBD so we went back to Remicade and added MTX. She did very well on that combination until she had side effects from MTX and refused to take it. Remicade stopped working a couple months after we stopped MTX. Both her IBD and JIA flared.
We went to Humira + Sulfalsalazine. That worked for a bit and her IBD was under control but her arthritis was not.

A new rheumatologist wanted her to try high dose Remicade (between 15mg/kg - 20mg/kg). We added Imuran when her fecal calprotectin came back high. She is finally doing better -- the IBD is under control and the JIA is getting there (fingers crossed!).

We did test for antibodies several times and she never had them. She did do the loading doses every time. The third time they were slightly different because it was such a high dose of Remicade. So far, no increased infections or anything like that. She's tired the day after the infusion but that's it.

Good luck!

 

[Worried mama]

Our dr also gave us the choice. My son will start remicade next week. We chose this bc it's not as painful, less blood draws, works faster and when we asked dr what he would do if it were his child, he said remicade...hoping it works!

 

[Mehita]

My son loves Remicade. Once every eight weeks for about three hours is WAY better than popping lots of pills every day. He's been on Remi for 14 months and in remission for 13 of those 14 months.

We chose Remi over Humira mostly because of his needle issues. He can handle the IV poke with the help of a j-tip, but doing a weekly shot... not so much. I dread the day we have to switch. He also had an abscess and fistula which I believe Remi is the better choice for.

Sitting at the hospital is no big deal to him. The nurses make it fun and he plays video games the whole time (something that is not allowed at home for that long). Sometimes he has a friend come along and we make a day out of it. The last couple infusions he's been tired enough to take a nap after, but I attribute this to the Benedryl they give him and teenage growth. Besides that, no other side effects.

It's been the best decision we've made for him. Good luck!

 

[Farmwife]

My five year old had done both.
She/we prefer Remicade over Humira for the above reasons.

I hope it works wonders.

 

[cre]

My 3yo started on Remicade without choice at 2 1/2 yo. We would numb his arms in any area they may try to start the IV and that seemed to help. As others have mentioned they do the blood draws at the same time and we liked that. I would pack snacks, drinks and he got to watch TV or movies for 3 straight hours which was a treat to him. He developed antibodies 5 month into the infusions and we switched to Humira. Humira is cheaper than Remicade and Humira is also more "convenient" as you administer the shot at home however, the blood draws every 2 weeks are not "convenient". We aren't sure that the Humira is working that great for us and as of now our Dr. is adding other meds to hopefully boost the Humira. The Humira comes in pre-filled syringes so we would have to do an additional dose rather than just up the dose a little. I would choose Remicade for us.

Good Luck to you and your family in making this decision, I know how hard it is to make these decisions especially when it's our children.

 

[Pilgrim]

I don't mean to derail the thread - actually the info would be relevant to the OP-

cre are you sure the blood draws every two weeks relate to the Humira? Or is it the Humira/Imuran combo?

My daughter started Humira and we were told blood draws every 2-3 months. She is on Humira monotherapy.

 

[Brady's Dad]

All of this information is incredibly helpful. Thanks to you all.

 

[cre]

Thank you Pilgram you are right,, it is the combo. Because his inflammation wasn't good when we started just Humira we were going every 2 weeks.

I guess just getting everything done at once, blood and Remi as opposed to seperate visits was helpful for us. We had our infusions at the doctors office so our Dr. visits also were during the infusions which was great!

 

[Maya142]

cre, my daughter has weekly then biweekly bloodwork when Imuran was first added to Remicade. Now that she has been on it for a while with no issues, she only has bloodwork every two months. Hopefully it'll be the same for your son eventually!

 

[my little penguin]

Ds is on humira /Mtx combo
Imuran/Mtx/6-mp
Only need draws every two weeks to start then once a month then every two three months regardless of if they are in combo with Humira/remicade

Ds only gets blood every 2 months on mtx plus Humira
Good luck