What to choose 😕
- Thread starter dodie74
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Hi there, your doctor is going to make the final determination but most kids go on IFX first. Its a slightly older drug so its safety profile has been studied more than ADA. Plus it is administered in your doctors office or outpatient infusion center, where the nurses can monitor the rare instance of any adverse reaction. Of course as you progress through the years, based on development of antibodies or the sheer convenience of having an injection at home, you may graduate to ADA. Hang tough in there!
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Only thing a we live 3 hours drive from where infusion would be too, would be quite stressful for him I think too and as his ibd nurse said 2 hr infusion then 2 hours after for safety too. After our chat next week we will know more and can make our decision xx
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Here were our pros for remicade(GI had in office infusion lab):
1. Infusion and check-ups scheduled together. So no extra trips to the GI for follow-ups
2. Labs were done at infusion so no extra lab visits.
3. Infusion time was great study/down time for C.
4. C was used to IVs so infusions weren't bad.
5. More room for dose and schedule adjustment.
Cons
1. For me, infusion meant waiting room times.
2. Our GI is a couple hours away so it was a day trip every six weeks. We didn't have a lot of issue with this since wed be going for doc visits anyway.
Humira
Pros:
1. For most there would be convenience since it's self injection but we still have to drive for doc visits so kinda void in our case.
2. Also convenience for not missing a day or couple hours for school
Cons (C is 19 and in college)
1. The shot has been painful for him. We've switched to syringe instead of pen and added lidocaine but it's aggravating to load.
2. The ease of blood work and checkups with infusions is gone.
3. I never worried (nor did the GI) that C was doing his meds with remicade since it was in lab but with the shots(and painful) I have to admit it concerns me.
4. There seemed to be a higher level of communication since we essentially saw the GI or his nurse every six weeks for remicade. This is compounded by the fact that C is not at home so I don't keep up with his daily activities.
I think the bottom line is its really dependent on the person and their situation. For us, remicade had more advantages.
1. Infusion and check-ups scheduled together. So no extra trips to the GI for follow-ups
2. Labs were done at infusion so no extra lab visits.
3. Infusion time was great study/down time for C.
4. C was used to IVs so infusions weren't bad.
5. More room for dose and schedule adjustment.
Cons
1. For me, infusion meant waiting room times.
2. Our GI is a couple hours away so it was a day trip every six weeks. We didn't have a lot of issue with this since wed be going for doc visits anyway.
Humira
Pros:
1. For most there would be convenience since it's self injection but we still have to drive for doc visits so kinda void in our case.
2. Also convenience for not missing a day or couple hours for school
Cons (C is 19 and in college)
1. The shot has been painful for him. We've switched to syringe instead of pen and added lidocaine but it's aggravating to load.
2. The ease of blood work and checkups with infusions is gone.
3. I never worried (nor did the GI) that C was doing his meds with remicade since it was in lab but with the shots(and painful) I have to admit it concerns me.
4. There seemed to be a higher level of communication since we essentially saw the GI or his nurse every six weeks for remicade. This is compounded by the fact that C is not at home so I don't keep up with his daily activities.
I think the bottom line is its really dependent on the person and their situation. For us, remicade had more advantages.
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If you didn't have the drive, I'd say definitely Remicade, but with your distance, I think I might start with Humira. Is there any way that you could find a clinic willing to do the infusion that is closer to your home? We don't do our infusion at a children's hospital any more; we're just at an adult clinic location (but it is a dedicated infusion center). Good luck making the decision.
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It really depends.
For us, the pros and cons were very similar to those Clash listed. My girls were both put on Humira first. The biggest pro we liked was the convenience - easy to travel, shot is done in 10 seconds. The biggest con was the pain of the shot - both my girls hated it. They were old enough to understand they needed it, and so dealt with it, but they always hated it.
The other con with Humira is that it can take time to kick. For my older daughter, it took about 3 months. For my younger daughter, it took 6 months, and we had to add Methotrexate and making the shots weekly. There is just not as much flexibility with Humira - there is a kiddie dose and an adult dose. It can be every other week or weekly. That's really it.
The pros of Remicade for us were: just an IV - not painful, bloodwork was done at the infusions, lots of flexibility with the dose and the frequency (GREAT for growing kids), and that the infusions were kind of fun - my girls quite liked the chance to watch TV, relax and miss school! It also tends to kick in faster than Humira.
The con of Remicade was really the inconvenience - makes traveling hard, has to be scheduled around infusions. For the first couple infusions we did have to wait after the infusion was done to make sure there were no reactions, but I'm not sure that every infusion center does that and anyway, after the first few, they let us go home immediately.
Since you would have to travel so far for the infusions, Humira is a good option if your son is willing to deal with the painful shot. My older daughter recently moved from the Humira pen to the syringe and says it hurts less. But it still does hurt. You can use ice and try distracting him (asking questions, watching TV) during the shot, that might help.
It really depends on what your son wants - I think the thing to remember is that there really isn't a "wrong" choice here.
For what it's worth, both my girls preferred Remicade even though it was inconvenient. But Humira did work very well for them - in fact, I'd even say that it worked better than Remicade for both of them. Every kid is different though.
Good luck!!
For us, the pros and cons were very similar to those Clash listed. My girls were both put on Humira first. The biggest pro we liked was the convenience - easy to travel, shot is done in 10 seconds. The biggest con was the pain of the shot - both my girls hated it. They were old enough to understand they needed it, and so dealt with it, but they always hated it.
The other con with Humira is that it can take time to kick. For my older daughter, it took about 3 months. For my younger daughter, it took 6 months, and we had to add Methotrexate and making the shots weekly. There is just not as much flexibility with Humira - there is a kiddie dose and an adult dose. It can be every other week or weekly. That's really it.
The pros of Remicade for us were: just an IV - not painful, bloodwork was done at the infusions, lots of flexibility with the dose and the frequency (GREAT for growing kids), and that the infusions were kind of fun - my girls quite liked the chance to watch TV, relax and miss school! It also tends to kick in faster than Humira.
The con of Remicade was really the inconvenience - makes traveling hard, has to be scheduled around infusions. For the first couple infusions we did have to wait after the infusion was done to make sure there were no reactions, but I'm not sure that every infusion center does that and anyway, after the first few, they let us go home immediately.
Since you would have to travel so far for the infusions, Humira is a good option if your son is willing to deal with the painful shot. My older daughter recently moved from the Humira pen to the syringe and says it hurts less. But it still does hurt. You can use ice and try distracting him (asking questions, watching TV) during the shot, that might help.
It really depends on what your son wants - I think the thing to remember is that there really isn't a "wrong" choice here.
For what it's worth, both my girls preferred Remicade even though it was inconvenient. But Humira did work very well for them - in fact, I'd even say that it worked better than Remicade for both of them. Every kid is different though.
Good luck!!
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Ds has been on both
Remicade increased ds skin issues but he preferred it over humira due to the medicine pain ( not the needle stick )
Remicade is every 8 weeks most have their check with the gi the day of the infusion as well as blood draw so one trip every 8 weeks
You can increase the amount so you get the same dose ( Mg/kg) with remicade
Humira your child may start at 40 mg ( adult dose ) and weigh 35 kg (1.1 mg/kg)
But will gain weight as they grow so the amount of mg/kg is constantly going down
Ds is at the max frequency after 4 years(weekly ) mainly because he keeps growing or gaining weight so the mg/kg keeps decreasing at 45.5 kg he is down to 0.8 mg/kg.
Humira took 5-6 months to work for ds vs 7 weeks for remicade
Good luck
Remicade increased ds skin issues but he preferred it over humira due to the medicine pain ( not the needle stick )
Remicade is every 8 weeks most have their check with the gi the day of the infusion as well as blood draw so one trip every 8 weeks
You can increase the amount so you get the same dose ( Mg/kg) with remicade
Humira your child may start at 40 mg ( adult dose ) and weigh 35 kg (1.1 mg/kg)
But will gain weight as they grow so the amount of mg/kg is constantly going down
Ds is at the max frequency after 4 years(weekly ) mainly because he keeps growing or gaining weight so the mg/kg keeps decreasing at 45.5 kg he is down to 0.8 mg/kg.
Humira took 5-6 months to work for ds vs 7 weeks for remicade
Good luck
No, still Remicade since April of 2015.
CarolinAlaska
Holding It Together
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We had similar question earlier this year, with distance and all. We ended up leaning towards Humira because Jae gets thrombophlebitis after any infusions - including saline! Fortunately, her Crohn's finally settled down after last prednisone run and tweaking of 6MP. Jae is older, but ever since we started trying to figure out what's wrong, I promised I'd let her know what the options were and include her in the decisions. She has been very good with this and has only ever used her vetoing power when it came to the decision to do a g-tube.
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I had a chat with him yesterday and he is thinkng about infliximab as he said he really doesn't want to do another injection, he already injects methotrexate. Maybe once we have a chat with the team properly this week we will all know more about both drugs and come to a decision. Xx
We've not done humira, but my son was on MTX injections. He is now taking MTX orally and is on Remicade every 8 weeks. He much prefers Remicade to the weekly injections. It means less dr visits for us, as we see the GI and have bloodwork done on each Remicade infusion day. It does make for a long day, but my son likes having the day off school and finds it almost relaxing once the IV is in. Hope your son has good success with it!
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Remicade and humira do not cause skin issues
But if your kids are prone to skin issues ( i.e. Ezcema rashes etc)
Then both meds are known to bring them to the surface so to speak
Some get rashes with humira and some get rashes with remicade
It's hit or miss
Fwiw ds had rashes with remicade and developed dyshirotic ezcema
But the ezcema stayed with humira
But if your kids are prone to skin issues ( i.e. Ezcema rashes etc)
Then both meds are known to bring them to the surface so to speak
Some get rashes with humira and some get rashes with remicade
It's hit or miss
Fwiw ds had rashes with remicade and developed dyshirotic ezcema
But the ezcema stayed with humira
My son has always off and on excema in the past, but I would say his skin has actually improved since starting Remicade. We've been more prudent with using organic type lotions over this past winter, so maybe it has to do more with that. Either way, we've not had any adverse skin issues while on Remicade.
