Humira vs Remicade

[Chronsmommy]

Excuse my Crohn's spelling mistake in my name. I was stressed when I created my profile and can't seem to fix it now!

My daughter's GI wants to switch her to Humira or Remicade. He said if her symptoms were acute he'd put her on Remicade but since it isn't I have more choice in the matter.

I like the idea of Humira because we live 1 1/2 from the infusion center and it seems more flexible and quicker. But I'm nervous about the comments I've read about the pain of the injections. My daughter is 8 and she's pretty good now with getting blood drawn and IVs and the like but I also can see that if it is painful it could easily become an issue.

Any one with experience with both? Thanks so much. I've learned a lot from the posts on this forum.

 

[Maya142]

Yes, my daughters have been on both.

Humira burns. There is no denying that. My girls absolutely hated the shots at first. With my older daughter, who was 15, I think, there were lots of tears. With my younger one, who was 13 at the time, no tears, but she dreaded injection day.

However, they both got used to it. They soon figured out that 10 seconds of burning pain was better than pain all the time.

Things that helped - distraction (watching TV during the shot), ice before and after the shot, letting the shot come to room temperature and using the syringes instead of the pens. The pens hurt a LOT more according to my daughter because you can't control the rate of injection.

AbbVie, the company that makes Humira, is introducing a no-sting version of the shot for pediatric patients later this year - they said mid-2018. However, in 2016, we were told it would be on the market in 2017 and it never happened.

Humira is usually every other week, but some kids need it weekly. My kiddos did.

There are advantages to Remicade. It works faster. It's just an IV and in-between infusions (which can be anywhere from every 4 weeks to every 8 weeks) kids can just forget about IBD and just be kids. Blood work can be done at infusions, so just one poke. There are things that help with the IV - numbing cream, being hydrated, hot packs, Buzzy.

The other BIG advantage is the flexibility with the dose. Remicade is dosed by weight, which is very helpful for growing kids - most start at 5 mg/kg but you can go up to 10 mg/kg and some GIs will go even higher.

Humira only has two doses - 20 mg and 40 mg. And it is not dosed by weight in the same way.

From what I have read here and from my experience with my own kids, most kids prefer Remicade. The inconvenience of the infusion is preferable than the weekly painful shots.

My girls did not mind the infusions at all - it was day off from school when they could nap and watch TV. The nurses are great and really fuss over the kids.

Good luck!

 

[my little penguin]

We did both
Remicade for 8 months then he reacted twice
Infusions were great
Ds and Dh had s guys day
Remicade can be changed to match growing kids
So as the gain and grow the dose is per kg
Not aset mg so they get the same dose level

If need be you can increase the dose and frequency as needed
Fairly easily


Humira Ds was on for over 5 years
Basically he probably put grew
At age 9 and 70 lbs he was getting 40 mg every 2 weeks for a shot
By age 14 and 130 lbs still getting 40 mg but even at every 5 DAYS
It wasn’t enough
His weight almost doubled but dose remained the same


That said both healed his intestine

Growing kid Remicade is better
Ds is now on Stelara
Just had a scope this week
Waiting for biopsy results

 

[Farmwife]

We did both.
My girl was 5 when we tried humira.
She did the shots because she didn't have a choice.
She was on it for 5 months before the doc changed her to Remicade.
4 years later Grace remembers hating that shot.

 

[Pilgrim]

We use Humira because we are also very far from the infusion location.
Meds come to our door. It is very convenient.
Our daughter started at age 4 and is now 7 with a weekly shot. She doesn't fuss about it now but she doesn't look forward to it.
She dreads an IV too though.

 

[crohnsinct]

You have gotten good perspective above. My daughters have not used Humira but let me add that with biologics it is a matter of time before they lose response. There is no way of knowing how long that might be. For some it can be 2 years and some people are on it for 12+ years. Infusions in college are logistically difficult. Time out of class, getting to an infusion center, if you get home infusions you have to get yourself to a lab to get blood draws, fecal cal pro etc. My college daughter may be be losing response to Remicade (it has been 6 years) and she is glad she used Remicade first because she feels Humira shots in college are going to be so much easier. In her words, "I am glad I saved it for now". She also feels that if Humira works, it will be easier during her younger years trying to establish herself in the professional world (shots=less time off work).

 

[Jenn]

Usually insurance requires trying Remicade for kids first, then progress to Humira if/when Remicade fails. That's what we did. There are pros and cons for each, Remi infusion lab takes time, but nurses do ALL the work, which is nice, plus no separate bloodwork visits; Humira injections are convenient at home, but YOU have to do them, I recommend the syringe, not the epipen, and they are really really really painful shots. Check out the sticky for treatment clubs- http://www.crohnsforum.com/showthread.php?t=44908

You can contact the forum manager to have your username changed - click 'contact us' at the bottom of any forum page.

Best of luck to you and your daughter

 

[Chronsmommy]

Thank you for all these responses. I was leaning towards Remicade and then discussed it with my daughter (came up organically because she was asking about her medicines and I mentioned she would be switching). She feels strongly that she'd prefer the infusions over the shots so that makes it easier. Having her on board will ease the whole transition. Going for a PPD test for her today.

My one worry is about the timing of the infusions and summer vacation. The GI said the infusions should be as close to the 8 weeks as possible. Do you all try to stick to the schedule? How much wiggle room have you taken? Has that been a problem in terms of family vacations or camp or that sort of thing? I sometimes go away for three weeks with the kids during the summer.

 

[Maya142]

Honestly, you will learn to work around it. Also remember she may not be on every 8 weeks - they usually plan for that but many kids need it more frequently - every 6 weeks or every 4.

They gave us wiggle room of a few days. We planned around it and it wasn't as hard as it sounds.

Glad your kiddo is helping you make the decision! Most kids prefer infusions honestly, especially since Humira burns.

 

[crohnsinct]

Yeah, few days here and there as long as they are in remission and you are going same week it is due, you are usually fine. If there is a vacation or camp we just went a week or so early. On an 8 week schedule they rarely will let you go a week late but we have gone a week late for some things. It changes around a lot. We actually went for infusion the day we were flying out...literally, on our way to the airport!

 

[pdx]

My daughter gets her infusions every 6 weeks, and we are free to go up to 3 days early or 3 days late. With that flexibility, I can usually fit in anything, as long as I'm always planning about 6 months ahead. I try to rough out our summer schedule during the winter, and then I plot out when the infusions should be throughout the spring to make the summer schedule work.

Like Maya said above, you will probably end up changing frequency during the first year, so don't worry about timing yet. It seems like most kids here have ended up on an every 6 week schedule, but some are on every 4 weeks and a few are every 8 weeks.

 

[Chronsmommy]

I just talked to the doctor's office and the insurance company said Remicade wouldn't be covered. The drug itself would be covered by the pharmacy plan, but not the infusions. (Her doctor does the infusions in the peds unit of his hospital and not an infusion center). I don't know if the sticking point is the infusion itself or doing it at the hospital, but it is super frustrating.

My daughter is going to freak out about the shots.

Has anyone else had this issue?

 

[my little penguin]

Talk to the insurance company directly and find out where they cover the infusions
Some require the drug be done by home health at your house
It may be simply a location thing
Then talk to the doc
Tagging crohnsinct her kids do theirs af “home”

 

[Maya142]

One of our doctors told us that there is huge push by insurance companies to do the infusions at home or at a separate infusion center - not in the hospital.

So like MLP said, I'd check about that.

As for the Humira shots, there is a new version of the shot that is supposed to be available to pediatric patients in mid-2018. It is not supposed to burn. It's been out in Europe for years, but is only just coming to the US.

So hang in there. She may have painful shots, but only for a few months. And there are lot of tricks to make Humira less painful, if that is what she has to be put on.

 

[crohnsinct]

Sounds like a location issue to me. The largest cost for an infusion is the drug itself. For some reason the home health providers get it at a fraction of the cost as some hospitals (in our case 75% less). The cost of actually administering the drug is very low in comparison, especially in the home health setting.

My daughter gets at home infusions and she LOVES it. It is comfortable, convenient, home health nurses can work later or on weekends so the kids miss less school and there is more flexibility with scheduling. As a matter of fact we have had an issue with her provider not having nurses in her area and her GI was getting office based infusions approved and she balked at the idea. She never wants to go back to office infusions.

I would definitely call your insurance company and get the low down.

 

[pdx]

My daughter originally got her Remicade infusions at the children's hospital, and then our insurance company required us to switch to an infusion center once she turned 13. We like the infusion center better, so it wasn't a problem.

So yes, definitely check with your insurance to see if there is an infusion situation that they would cover. And if there is, I would push your doctor to accept that situation. And if he doesn't, then he should be willing to appeal to the insurance company for you.

Good luck!

 

[Chronsmommy]

Ugh. Just found out her BCBS plan has an "exclusion" for Remicade infusions. We'd have to appeal. Of course this is making me wonder what other drugs or treatments are on the exclusion list, which could be a problem in the future.

Since the Humira has been approved it doesn't seem like it is worth going through the appeal process since Humira could be a great medicine for her. But I'm totally dreading tell her and dealing with the shots. She's going to be so unhappy.

This is the first time I've had to deal with insurance issues/limitations and I'm sure it won't be the last. But I don't like it at all!

 

[Maya142]

It definitely will not be the last . I think I spend half my time battling insurance. It has gotten worse in the last year or two for us and we also have BCBS.

Humira - there are tips and tricks to make it easier. Here are ours:

Do the shot while she is distracted - watching a video on Youtube, playing a video game, ask her open ended questions, watching a movie.

Use the syringe NOT the pen. We made the mistake of using the pen for years and my daughters thought the shot was horribly painful. But they refused the syringe because they didn't want to see the needle. A couple years ago, my older daughter switched to the syringe because I had heard on here it was less painful. She said it was a miraculous difference.

My older daughter does her own shots - she injected slowly and found it hurt less than way.

Consider teaching her to do her own shots. My younger daughter started at 13 and my older one at 15. It gave them control. I know that there are some 7-9 year olds that do it. Every kid is different but it is worth asking about.

Ice before and after the shot. My girls did belly or thighs - said back of the arm hurt more.

Take the shot out of the fridge and leave it out for an hour before you inject.

Expect that the first few times will be tough. My older daughter was 15 when we started I think, or maybe 14. She cried a lot. My younger one was 13 and didn't cry but was NOT happy. Dreaded shot day.

But once they figured out it helped them feel better - no tears, no complaining - in fact, they looked forward to shot day because they knew it would help.

my little penguin can tell you about adding Lidocaine to the shot.

 

[Chronsmommy]

It was a huge learning curve this week in terms of negotiating all the insurance stuff--multiple conversations to sort out all the complexities. Long story short is that as long as the hospital is willing to accept the Remicade from the specialty pharmacy (so the pharmacy plans pays for it instead of BCBS), the infusion itself will be covered. Fortunately the hospital is willing to accept outside medicine.

So I gave the doctor's office the go ahead to put the wheels in motion. I am so relieved on multiple fronts that we don't have to deal with Humira yet. (Before the Remicade stuff was sorted out I even called the Humira ambassador program and asked about the pediatric formulation. The nice nurse I spoke to didn't know anything about it. I had to show her the press release. She then put me in touch with an Information Officer who basically read me the same two sentence press release that I'd already read. Not holding my breath for the pediatric shots.)

Funny that I'm so happy that she'll be able to have infusions. I barely knew what an infusion was a year and a half ago. My whole world has shifted. Not to mention hers.

I really appreciate all the advice and support here. It's been invaluable.

 

[cre]

Ugh. Just found out her BCBS plan has an "exclusion" for Remicade infusions. We'd have to appeal. Of course this is making me wonder what other drugs or treatments are on the exclusion list, which could be a problem in the future.

Since the Humira has been approved it doesn't seem like it is worth going through the appeal process since Humira could be a great medicine for her. But I'm totally dreading tell her and dealing with the shots. She's going to be so unhappy.

This is the first time I've had to deal with insurance issues/limitations and I'm sure it won't be the last. But I don't like it at all!

Sorry your daughter and family has to deal with any/all of it!

My son has done both Remicade and Humira, we had to appeal both medications with BCBS (I’m not good with how insurance works in different states though). My guy did started with Remicade at 2 1/2 ( we too traveled about 2 1/2 hrs) and switched to Humira before 3 1/2. To be honest, neither was easy . For him, with infusions was never one stick to get the infusion going, it always took many pokes. After we would finally get it going, having to sit there wasn’t painful just time consuming. At age 6 he still dreads his weekly Friday shot and it does seem to hurt for 30 seconds but then it is over and he forgets about it for the following 6 days. We use lots of rewards for after his shot! Good luck to your family in whichever way you go.
PS. If you do go with Humira, check out the Humira card. No one ever told me about it, I came across it on my own after over a year. It now costs us $5 a month as opposed to $55 we were paying through insurance.

 

[cre]

Ugh. Just found out her BCBS plan has an "exclusion" for Remicade infusions. We'd have to appeal. Of course this is making me wonder what other drugs or treatments are on the exclusion list, which could be a problem in the future.

Since the Humira has been approved it doesn't seem like it is worth going through the appeal process since Humira could be a great medicine for her. But I'm totally dreading tell her and dealing with the shots. She's going to be so unhappy.

This is the first time I've had to deal with insurance issues/limitations and I'm sure it won't be the last. But I don't like it at all!

Sorry your daughter and family has to deal with any/all of it!

My son has done both Remicade and Humira, we had to appeal both medications with BCBS (I’m not good with how insurance works in different states though). My guy did started with Remicade at 2 1/2 ( we too traveled about 2 1/2 hrs) and switched to Humira before 3 1/2. To be honest, neither was easy . For him, with infusions was never one stick to get the infusion going, it always took many pokes. After we would finally get it going, having to sit there wasn’t painful just time consuming. At age 6 he still dreads his weekly Friday shot and it does seem to hurt for 30 seconds but then it is over and he forgets about it for the following 6 days. We use lots of rewards for after his shot! Good luck to your family in whichever way you go.
PS. If you do go with Humira, check out the Humira card. No one ever told me about it, I came across it on my own after over a year. It now costs us $5 a month as opposed to $55 we were paying through insurance.

 

[Marisa06]

Have you tried Stelera yet. My daughter has been on it for three years now many studies this is the new go to that works. Ask your doc 1 shot every eight weeks.

 

[Maya142]

Stelara is pretty new and only approved for adults. Usually insurance companies will not approve it for kids unless they have failed Remicade and Humira.

Our children's hospital (which has one of the biggest pediatric IBD centers in the country) is using it on kids, but mostly teens and only on those that have already been on at least one anti-TNF, if not both Remicade and Humira.

 

[my little penguin]

Same here Ds is on Stelara but after he failed /stopped working remicade /humira
He was on remicade for 8 months and humira over5years

Even then Stelara took many many months to get approval
Stelara is also very slow acting

 

[jacinthebox]

I can speak from experience of both that I personally would go with remicade. For me it was a much less stressful experience and my body reacted much better to that than humira. While I was on humira, I would often be more inclined to skip a dose not only because it was unpleasant to administer but also because it just took so much out of me afterwards. However given your issue with the distance I would say its worth a shot to try! I hope things get sorted for your daughter.