Humira versus Remicade for a teenager?

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S mom

S mom

Joined
Jan 29, 2012
Messages
124
Location
Niagara,
Hi everyone,
I'm looking for some input from you - I know you all have so much knowledge and insight...:heart:

My son is 17 now. He's been on Methotrexate for almost a year and a half. He did really well for a while but then this past fall his symptoms started to recur. We increased his dose of MTX to 25 mg/week (the max, I guess) but that has done nothing (we are 9 weeks into the new dose now). Still lots of diarrhea (including waking at night to go), weight loss, anemia again... yuck!
So, I have been talking to our GI/ IBD nurse and I think the consensus is that we should move up to a biologic to try and control this. When I last talked to the nurse, she basically said that it would be Remicade or Humira and that we should start thinking about which one we would prefer.

I know that Remicade would involve infusions frequently at first and then about every 6-8 weeks. And I know that Humira would involve biweekly shots (he has been giving himself his own MTX shot weekly for a year now so that's not an issue).

So, beyond that, what else should we be taking into account to help us decide? Any thoughts?
 
We have no experience yet but we're facing the same decision here... :(

Stephen's GI said he prefers remicade because of control and feedback issues...

Compliancy - with remicade there is a set apptmt, no issue with forgetting to have the shot and then having it a day or two late, etc. If a remicade apptmt is missed, he said he would be advised by the infusion centre.

Dosage - no errors with dosage (ie if some of the serum leaks out with self dosage) - remicade is administered by IV.

Feedback - he will be notified of any issues during remicade infusion by nurse/centre, labwork at each infusion.

He said these were his only reasons for preferring remicade over humira.


We haven't completely decided yet and one question/issue I have is flexibility... Humira can be taken with you during vacations, etc. I'm not sure if remicade schedule is adjustable at all???

Remicade infusions will require a time commitment of a few hours every 6-8 weeks while humira can be quickly done at home. However, my understanding is that the humira injections are painful.


Thanks for posting the question, I'll be very interested in reading others' opinions!
 
Remicade is usually tried first, I think because it was first developed and approved by insurance. I know our insurance only approved Humira after (statement from doctor) Remicade failed.

pros and cons to each, of course. He is used to the MTX shots, so maybe Humira is easiest for you. I thought Remicade was easiest, really, since the nurses handle everything, you just relax for a few hours every 8 weeks. The loading doses were +2 weeks, +4 weeks, then to maintenance. Personally, Remicade had a stronger effect on my son, but there is more risk for an allergic reaction. Ooh, but we didn't have to do bloodwork separately, I miss that, the nurses drew when starting the IV. For traveling, ideally you could schedule your travel around your infusion date, they are very well known... Humira can be transported, but has to be kept refrigerated, so not so convenient for travel. And the Humira shots are very painful.

Good luck!
 
It's a really tough choice. My son and I decided to try Humira first and he is 18 yrs old. Our decision came down to the fact Remicade has I believe 25% mouse antibodies and made us question if that was why some people had such bad reactions to it, we didn't study into it further so I could be wrong about the percent. My son felt that it had more risk due to the mouse antiboties so chose Humira and have had no problems with the medication or injections so far.

We maybe should have researched Remicade more but once he heard about that wanted to go with the Humira which was the one his GI recommended anyways.

Good Luck!!
 
We tried both but we 're required to try remi before I surance would approve humi. The shots are painful (I'm on it too) but not UN managebly so...it's a tough decision but I wish you the best ofcom with whichever you choose1
 
Our GI suggested Remicade for my son, he is 16, but said he would be fine with humira, also. The reasons he perferred Remicade were basically the same as the ones Tesscorm mentioned. The reason we chose Remicade was primarily the self-injections, at the time C wasn't terribly fond of shots.

C is on Remicade every 6 weeks as well as MTX, but he takes MTX in the pill form. We haven't had any issues so far(touch wood), it has been about 12 weeks since the MTX add.
 
I don't have any advice, as my daughter has been on very mild meds. But I want to offer you my support. This is a great place and I know you will get lots of support and answers. Good luck!
 
Thanks so much for your input - it really helps to hear what others have done. I know it's been said a million times before in this forum but these are really tough decisions - especially when you are making them on behalf of someone else. If I only had a crystal ball... then I'd know what was the 'right' thing to do...
 
Same here for remicade its been around longer so they know a little more.
DS likes the hang out time to relax.
That and insurance would only cover them in order .....
Good luck
 
We never got to the biologics, complications set in, but it was a consideration if there wasn't sufficient response to Pred after 6 weeks. Humira was suggested to us and I think that had more to do with our location than anything. We are rural and it would have involved a great deal of travel to get to an appropriate location to administer the infusion.

There are no wrong decisions hun, just different ones and any decision that you make is done in the best of faith with what you know at the time. :hug:

Good luck!

Dusty. xxx
 
I just wanted to offer some support. My input is about the same as everyone elses. GI said remicade more controlled and humira more convenient. We had to try remicade first because of insurance, so I would check on that. That being said, we liked the downtime at the infusions too. It was controlled by the nurses and thankfully so because Ryan had a severe reaction to it. I would have been in shock had that happened with a shot at home.

We have never done humira so I can't talk about that one. Saving it for down the road. Ryan is on methotrexate right now, so we give an injection of it at home once a week.
 
Thanks for your support - sometimes I need to be reminded that I can only do the best that I can do :)

We did some Prednisone in November and he just finished tapering at New Years... it didn't seem to do anything at all - never felt any better while on it, just slowly got worse as if he was not medicated at all. Maybe the dose wasn't high enough?? He did 30 mg for 2 weeks then tapered by 5 mg each week. Fortunately, he has not had the rapid, crazy complications that your kids had, Dusty...
They want him to do another round of Pred this time at 40 mg to help 'bridge the gap' until the Remi/Humira start to work (we hope!)...

Certainly the travel to an infusion centre (with time off school and all that) is a downside - it seems that Humira would be easier in that regard but he's a little uncertain about giving himself a 'painful' shot (MTX has been so easy for him - no pain with the injection)... so, we'll see. We meet with the GI next week to make plans - can't wait to be doing 'something' to make him feel better!
 
Lots of hugs to you... it is tough making these decisions! :ghug:

Good luck at the apptmt next week. If the pred didn't help much last time, would he consider doing exclusive EN? That was Stephen's treatment at diagnosis and he felt relief from his symptoms almost immediately (ie, within days) (he had also had a course of IV flagyl...). I'm sure you've read about it here but, while it can work very well, it's not an easy treatment (no food, formula only!). Let me know if you'd like any info on it and, as we're so close, I'm sure Stephen wouldn't mind talking with your son if he has any questions about it.

Good luck! :ghug:
 
Yes, we did EEN too for 12 weeks when he was first diagnosed - it worked wonders!! We decided (after much thought) that we would go the pred. route in Nov/Dec. this time just because it would have gone right through Christmas and New Years... and we were going down south to a resort.... it just seemed too tough to do... maybe not the right decision in hindsight but who knows.

I was considering EN again now as a possibility instead of redoing pred but the IBD nurse kind of discouraged it. They are hoping that the process of getting started on one of the biologics will be fast (here's hoping) and by the time the EN had a chance to make him feel better, he'd be into the treatment anyway - so he'd only be on the Pred for a short time and it would 'work' faster. I'm going to ask again, though, just to clarify. (also, I know when we looked into EN in November, we found that it was difficult to get coverage and that it might take a bit to get home care in to get us set up again - all wasted time while he feels crappy!) - sigh...
 
Its so frustrating having to 'wait' for the logistics of treatments! Going through that too :voodoo: We just want things to 'get going' but it always seems we have to wait for something else! Meanwhile our kids are just left waiting, waiting...

Just FYI, our insurance does not cover EN, however, the hospital connected us with a regional agency that covers the cost of the formula, equipment rental and home nurse visits. Let me know if you need any info.

I would've done the same re the pred vs. EN over the holidays! :( I would have felt that would have been too difficult and unfair to ask him. :( Also, I have read here that subsequent 'exclusive' treatments of EN don't work as well as the first... so, given that your son has already tried it, it may not be as effective again.

Good luck at the apptmt!!! :ghug:
 
At S's age 40mg of Prednisone would be a more standard starting dose and perhaps a longer at that dose before tapering. My son did not really respond to oral Pred either but he did have complications set in so I think at most it may have helped stabilise him??

Good luck with the Pred this time round and with whichever path you find yourself yourself on. :hug:

Dusty. xxx
 
With insurance, Remicade is used first in children, and if it cannot be used, (Our son was allergic to the mouse part), then Humira is approved. We did 3 infusions of Remicade and have been on Humira since Jan of 2011. My thoughts: Remicade would've been nice since its every 6-8 weeks. But it was also a pain to go to the infusion room at the hospital. An all day event. Humira is nice that its quick and done at home and we can take it with us if we are out of town...etc. Kinda yucky that its so often. Your son is used to weekly shots tho. If we ice the leg until its pinkish-red, my son says it doesn't hurt much. Both block the tnf the same I think. Those are my pros and cons.
As a mom, I like the fact that Humira is all human.
 
Just wondering... does anyone know if it matters (as long as insurance doesn't care) which one you try first? I mean, does one tend to work better if tried before the other in kids who are first starting biologics? Or is there any reason why if you fail one, then the other one won't work? ie: if you do Humira first and fail, then you can't go 'back' to Remicade (or vice versa)??

Brian's mom, those are the exact pros and cons that I can see too... so I'm ok with either one from a 'logistical' standpoint... I just want to make sure there is nothing else I'm missing before we see the GI this coming week and set things in motion :)
 
I'm on my mobile but David posted an article in the books and research forum about switching TNF biologics that may give you the information you are looking for. I think the title starts with Switching TNF when I get to a laptop I'll see if I can dig it up.
 
One thing to consider

Remicade dose can be tailored to the individual upped and lowered as needed.
Humira comes only in two doses kiddie and adult no room for adjustment
Which was one of the reasons we went with it.
 
I think the Dr's tend to go Remicade first because it was actually designed for Crohn's where Humira was originally an RA drug. Also, they can keep an eye on it at infusion. Since both are used regularly for Crohn's now, I don't know that it matters which you start with.
 
Thanks Clash! I think I have found the tread - lots of info there it looks like.
And I can see your point MLP, makes sense that maybe there is a little 'wiggle room' for adjusting doses more individually with Remicade.
 
My son's GI has said, once you pick one...its best to try and stay with the one you picked for as long as you can. Remicade is a murine-chimeric monoclonal antibody directed against TNF-α, Humira is a fully human monoclonal antibody directed against TNF-a. I am not familiar with the others, ie Cimzia and Tysabri. As I have been told, if tnf biologics fail...for reasons other than the whole allergic thing or anti bodies built up, that's when all the biologics fail. But I could have misunderstood this. Our son never did the 20 mg dose of Humira. He's been on 40 mg from the start. The only way to change the dose is to do what our GI did...move the shots closer together. I believe they do that with Remicade too. If 8 weeks don't work, they move to 6 weeks...4 weeks...etc.

Anti tnf drugs target a specific part of the immune system while some of the other drugs work by lowering the entire immune system.
Good luck in your decision. With moderate to severe crohns, both medications have made crohn's patients feel normal again.

After my son's allergic reaction to Remicade he went seamlessly to Humira. Both biologics helped lower his inflammation...so Humira kept doing that for him. It just didn't have that mouse part he was allergic to.
 
Is there any flexibility in the schedule for remicade? ie Stephen has a trip scheduled for this coming June (forget the date/week right now), as he hasn't begun remicade yet, I can work around this date but, if I schedule accordingly to an 8-week schedule and he then needs infusions every 7 or 6 weeks or if, in the future, something comes up and he will be away for his regularly scheduled infusion, can the infusion be pushed up or back at all?
 
I would ask your Gi - insurance etc...
But as long as its not more than 8 weeks you pretty much schedule a day that works for you.
DS is every 6 weeks now on paper but we had one infusion at 5 weeks 5 days and another at 6 weeks 2 days- just how it worked out.

You schedule enough in advance you get a little wiggle room just not longer than 8 weeks kwim.
 
You only schedule one infusion out at a time at least at our clinic since time frames can and do change - you may be every 6 for a while move to 8 back to 7 then to 6 etc....
 
I remember in the beginning having much anxiety about missing the 'Day'. Now that we've been doing biologics for a long time...sometimes you delay due to illness, once we had to due to delivery problem...doesn't seem to cause a problem if you're close. My sister in law once delayed her Remicade for 3-4 months...now that caused an issue for her, but who does that?!
 
Brian's mom, I am glad to hear that Humira worked well after reaction to remicade. Ryan had an allergic reaction to remicade and had to stop. We have yet to go to humira because methotrexate seems to be working for now. Glad to know that I can have hope in humira for the future.

When Ryan did take remicade, we moved his appts up or back because of illness. Didn't seem to affect anything or worry the GI. Only thing we ever had to worry about was an ear surgery we had scheduled. Had to schedule it at a certain time in middle of the infusion schedule so he was at optimum health.
 
I just wanted to thank you all again for your help - sharing all your wisdom and experiences. It really helped to have some insight/things to consider before meeting with the GI - it wasn't so overwhelming for us as we had considered many of the points that the doctor brought up (thanks to you all!).
In the end, we are starting Humira. The GI let us/my son make the decision as she felt that there was no medical reason why she preferred one over the other - she just emphasized that it was important that our son be reliable in following the treatment schedule if we chose Humira. That wasn't a concern as he's been awesome in injecting MTX for the past year.
So, any time now (as soon as the nurse calls to schedule the first appointment to come and 'teach' him how to administer the injections) he will be starting on Humira (he will continue with MTX for the time being as well and will also continue with this current round of prednisone)... yikes, :eek2: I'm a little scared but also a little excited that maybe he'll finally be feeling better - it's been a long haul and it's about time he started feeling better and stopped losing weight!! Positive vibes, right?
 
positive vibes, Yes!
I think with his age he'll be glad he has something he can do at home. Especially when he goes to college.
Thanks for the update. I hope everything goes fantastic. (Ice the leg before helps with the short burn it has. But your son is a veteran with injections. He'll do great)
 
Thanks! He did his first 'loading doses' last night (4 pens). Was a little scared at first, I think, but after he injected the first one, he admitted that it really wasn't bad at all - just a little stinging as it went in and pretty easy to administer with the pre-loaded pen (vs. the syringes with the MTX). And, to my relief, he seemed to have no reaction or anything... so now I guess we just wait and see what happens... next loading dose is 2 pens in 2 weeks.
 
Good luck!!! :thumright: I hope the humira can be started soon so he'll be feeling better asap!!!! Let us know how he's doing! :ghug:
 

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