Talk to me about Humira

[buchanaj]

I just got the call from DD (13) doctor. Her inflammation markers are up and he wants to start her on Humira. She's been on prednisone or entocort since her diagnosis in December. She's also been on Pentasa. I'm nervous and need to know what to ask. We see the doctor on Thursday. I dread telling my daughter she has to have injections. Ugh. Fire away . . . what do we need to know? What do we need to ask? Where can I get some Valium to calm my nerves?

 

[Maya142]

Humira is usually given every 2 weeks. I won't lie, it is a painful shot. My daughters hated it but got used to it. We used to give it while they were watching TV so that they'd be distracted. It's not the needle that hurts much, it's the medication which burns.

Couple things that might help:
- Take the shot out of the fridge and let it warm up before giving it
- Ice the area (we used their thighs) before the shot. We also ice after the shot.
-Use the syringe, if she does not mind seeing the needle. People say that the syringe is less painful than the pen because you can control the rate. My older daughter has just switched to the syringe and says it is less painful. She had been using the pen for years. The pen is easier to use and easier if she wants to give herself the shots.
-Some parents add Lidocaine to the shot to make it less painful. Paging my little penguin.
-We always did some kind of treat after the shot - cookies, cake, chocolate, donuts - something like that!
-Distract her during the shot - talk to her, ask open ended questions.

My girls had no side effects at all with Humira. It worked very well for both of them. No increase in infections or anything like that.

I will say that they both preferred Remicade, even though the infusions are more inconvenient. That's just an IV, every 6-8 weeks (usually) and then in between the infusions, they can forget about their illnesses. They also liked that they got to miss school for the infusions and watch TV and nap.

Most pediatric GIs like to start with Remicade because it is less painful, but honestly, they both work well. Remicade tends to kick in faster.

Good luck!

 

[buchanaj]

How many shots did your child have to have the first time? I am just dreading this. My daughter does not respond well at all to injections/blood work/etc. I'm honestly not sure if she will "let" them do it. Oh man . . . this is going to take some SERIOUS bribery.

 

[Clash]

My son started humira last year. He truly hates the shots. Like Maya142 said it's the burn of the med not the needle. He's been giving himself methotrexate shots every week for a couple of years and he doesn't mind them at all.

We recently switched from humira pen to syringe and he says its less painful, we also added the lidocaine.

He was on Remicade first and like it so much better. So did I since blood work and checkups could be scheduled at the same time.

They get 4 shots the first loading dose, 2 shots 14 days later then 1 shot every 14 days. A humira nurse comes out and trains you/the child how to give the shots and she also gives the first 4 at the first dose. Or at least this is how it was done for C and it was done through Humira Complete program which also gives you a discount card that is not financially needs based.

 

[Maya142]

For IBD, usually they do 4 shots on week 0, 2 shots week 2 and then 1 shot every two weeks after that. My kiddo did the loading dose - not fun. But after four shots, one shot suddenly seems like no big deal.

We went in to our doctor's office to get trained - they showed us how to do the shots.

If your child is very against shots, I'd ask about Remicade. That is usually much easier on kids.

 

[Mehita]

Is there a reason the GI wants to do Humira first instead of Remicade?

 

[Tesscorm]

Hugs to you! :ghug: It's just heartbreaking when we have to ask our children to do something so unpleasant! :ghug: No experience with humira but I would definitely insist on the lidocaine - it should be an easy thing to do (ie I think the GI just needs to prescribe the lidocaine and, perhaps, you need to mix it??) so, I would think well worth it if it lessens the pain.

Also curious why not remicade first... My son has remi infusions and doesn't mind them (although he is older), biggest downside is the apptmt every six weeks (but, he is out of town at school, so it does take a bit more planning).

If you do have the option of choosing between humira and remicade, I would speak to your daughter about the choices. It's possible her humira schedule will be tightened (every 10 days or weekly) and, if she has a difficult time with needles, etc., you need to keep this in mind. Teens can be tough and you don't want to find yourself in a position where she starts refusing the shots because they're too frequent. Frequency of remicade can also be tightened (from 8 weeks to 6 or even every 4 weeks), but I don't think it's ever more frequent than 4 weeks and remi isn't painful (only the iv poke). So, even though she's only 13, I would make her aware of the options and consequences of each and let her have a say in the choice.

I'm sure you already know but, with biologics, if you stop using them, you can develop antibodies and not have that med available to you again. So, she needs to know, the decision she makes, she must stick with.

Of course, there are benefits with humira as well... more convenient, even if weekly. Shot can be done anywhere and takes just a few minutes. Remi infusion takes approx. 2-3 hours and schedule can't vary by more than a few days (ie you need to plan ahead for vacations, etc.). Unless your clinic has Saturday apptmts, she'll have to miss school.

Another remi benefit is they do labwork at the same time. Not sure how often labwork is done with humira but it will require a visit to lab and another 'poke'.

:ghug:

 

[buchanaj]

Not sure why doctor is recommending Humira over Remicade. We have an appointment tomorrow and I've already started a list of questions. I talked with DD about it a bit last night. As suspected, she's not happy at the prospect of more needles but understands it comes with Crohn's. When I mentioned Remicade vs. Humira, she wasn't too thrilled with having to sit through an infusion. However, given some time to think about it she may change her mind. Personally, I hate the idea of having to give her a shot.
Thanks for all the feedback. I've got a list of questions ready for her GI. Will let you know how it pans out.

Jennifer

 

[Clash]

With remicade most centers have pediatric IV centers. My son's GI had an in office IV lab. So, all peditric at infusions the nurses cater with drinks and snacks, they have big flat screen tvs, bring your on movie or choose from their library, wii, xbox, games.

My son would also use the time for homework and the kids would exchange fb, instagram, twitter.

Not at all seeming like a hospital enviroment.

Infusions run from a lil over an hour to maybe 3 or more depending on how fast the infusion can be run. My son was generally 1 hour 30 to 3

 

[Tesscorm]

Good luck tomorrow! I'm sure your GI will help you sort through the questions.

And, yes to what Clash said... my son's infusion centre isn't at a pediatric facility but it sounds like the environment is similar... big comfortable chairs, big screen, movies, etc. My son usually just sleeps while he's there but he does take his laptop and has read or studied too. He doesn't mind the actual infusion, it's just needing to go at all that annoys him at times, especially when it falls on a long weekend, etc. (his are scheduled on Saturdays).

 

[pdx]

I'm sorry that your daughter's inflammation markers are up, but glad that your doctor is taking it seriously. Like others here, I would encourage you to ask about Remicade. My daughter has trouble with shots/IV's, and I think that Remicade is easier for her than Humira would be. (We haven't used Humira, though.) I hope that whatever option you choose, it works really well for her!

 

[Maya142]

My kiddos liked Remicade infusions too. All the infusion centers we've been to either had comfy reclining chairs or small beds for the kids to lie on. The nurses fuss over the kids, more so at pediatric infusion centers, but also are very chatty and nice at the adult centers (my older daughter went to an adult center when she was on Remicade). They usually give them snacks and the kids get to nap/watch tv/ catch up on homework etc.

My girls actually liked missing school for it, though it does become more inconvenient in high school. The actual infusion is about 2 hours long but you're there longer because of the time it takes to set it all up - put in the IV, draw blood for labs, get the medication from the pharmacy etc.

If your daughter is wary of needles, Remicade is definitely the way to go. You can get Buzzy for the IV, if you haven't already: http://buzzyhelps.com

And it would be just one poke for both labs and the infusion. The other advantage of Remicade is that the doctor has a lot more flexibility with dosage which is based on your kiddo's weight (usually 5mg/kg - 10mg/kg) and frequency, which works well for growing kids, who tend to metabolize drugs faster.

Humira just comes in two set doses and you have less flexibility with the frequency - you can go from every two weeks to every week but that's really it.

Both drugs worked well for my daughters, but Remicade was definitely the one they preferred.

 

[Jenn]

I think many insurances require trying Remicade before Humira for kids, but that may have changed. I have a bit of a needle phobia myself, it took a long time to get comfortable giving him the shot. The medication does burn, but it is so, so worth it, it's been 4 years now. I use the syringe over the epipen, so I can dose slower, which is less painful. Also take it out of the fridge about 20 mins before injection while I ice up his leg. I alternate legs and areas, correlate months to dial on a clock... The GI nurse did the first two injections and Humira sponsors an at home nurse for training. It's pretty quick and easy, just not painless.

 

[my little penguin]

Ds has been on humira for 4 years almost
Prior to that he was on remicade but had allergic rxns


Humira burns a lot
We add lidocaine ( prescription from his Rheumo ) to the humira syringe
This helps with the ph and the med burns less

Also did a lot therapy with him on why he needs the med
And ask thought provoking questions
So he has to think of an answer while getting the shot this blocks the pain signals to the brain and majes the shot less painful


Ds loved remicade - day off school
Lounging in a chair watching movies with warm hospital blankets - nurses spoiling him junk food - he spent the day with his dad so lots of guy things

 

[ronroush7]

The ambassador told me to not use the same spot too often so you don't get scar tissue

 

[crohnsinct]

Our infusion center doesn't have big screens, snacks or anything particularly exciting BUT the infusions are not hat bad at all. The biggest inconvenience is the time out of school.

At our clinic they prefer to start with Remicade for two reasons. If the kids are growing there is more flexibility with dosing. Also, it is typically just a matter of time before you reach the end of an anti tnf's usefulness...either you stop responding or build antibodies. There is no way to know how long that will be. My older daughter has been on Remicade 4 years and going strong. Anyway, GI's realize that the college years or young working career years make it difficult to schedule time off for infusions so they start with Remicade with the understanding that come college time, it may be necessary to switch and you can switch to Humira.

Now I am going to throw a monkey wrench in the works. There is a step between Pentasa and biologics and that is immunomodulators. You may want to ask your doc why this step is being skipped. It might be a viable alternative.

Good luck!

 

[Pilgrim]

Our daughter has been taking Humira now for over a year and is on a weekly schedule. I have been given the option of taking her to our local clinic where an RN does her injection.
I don't know if you can do that, but I understand that a Humira nurse can come to the home indefinitely. We just didn't have one in our area. There are two hurdles-one is the patient but in this case also the other hurdle is mom or dad who gives or facilitates the shot.We found that just being in the comforting role was helpful and let the nurse do the shot.
It's over in a minute.We talk a lot about how she hates the shot but how it allows her to go to school/play t ball/eat her favorite foods.
We have a rule "No worrying or talking about it until shot day." It helps her not to anticipate it too much.
We never did Remicade. It sounds like fun - in a way. For us we couldn't work with the travelling to hospital possibly monthly.

 

[my little penguin]

Pilgrim
Getting a nurse or the peds office to administer the humira shot is not an option in the US.
Only for the first training

 

[Pilgrim]

Oh, sorry about that! Maybe we were offered that because she is so young.

 

[my little penguin]

Don't think so they use humira in really little kids for JIA here a lot
Same with juvenile diabetes they just train parents and then train the kids
I think at the age of 6 for kids to be trained

 

[Maya142]

Yeah was going to say that I have met parents of 2 year olds with JIA on Humira. They give their kiddos the shots at home.

We have also met kids as young as 8 who give their own shots, which I thought was very impressive!

 

[Pilgrim]

I'm not really certain why that is. In Canada Humira is not approved for patients under the age of 13 with Crohn's and under the age of 6 in JIA. She started it at age 4 now she is 5. So it could be a monitoring thing. Also the vials come in a full adult dose and the nurse injects half to get the pediatric dose. It's interesting the differences between countries.

 

[my little penguin]

Ours are pre filled syringes
There is kiddie pre filled and adult prefilled
No vials at all
Approved for JIA age 4 and up
I think it's approved for adult crohns now not sure since Ds started before it was approved for adult crohns in the us
Not approved for pediatric crohns yet ...
But haven't checked

If it's vials that might explain it
But diabetes has vials and so does the lidocaine I add to the syringe is drawn up by me from a vial and injected into the humira syringe so it's only one shot

 

[Mehita]

How'd the appointment go, buchanaj?

 

[Jacksik]

I just got the call from DD (13) doctor. Her inflammation markers are up and he wants to start her on Humira. She's been on prednisone or entocort since her diagnosis in December. She's also been on Pentasa. I'm nervous and need to know what to ask. We see the doctor on Thursday. I dread telling my daughter she has to have injections. Ugh. Fire away . . . what do we need to know? What do we need to ask? Where can I get some Valium to calm my nerves?

You'll get a box delivered to your home..about 10 ice packs.Alcohol strips and the syringes..It's pretty easy..Pick a spot on your thigh,wipe the alcohol pad .take cap off of syringe,pinch the area of your wiped thigh,inject the syringe and that's it..No worries

 

[buchanaj]

How'd the appointment go, buchanaj?

Appointment went well. Got a lot of questions answered. Doctor said he prefers Humira over Remicade as his experience is that less kids develop antibodies to Remicade since it includes a mouse protein. We discussed the other options (6mp, Imuran, etc) and, while the doctor said it was up to us what we wanted to do, he was concerned about the length of time she would have to remain on steroids while we wait for one of those drugs to work. With the Humira, he plans to start weaning her off the steroid over a 6 week period, as soon as our loading doses are done.
I got a copy of her recent blood and stool tests back. Her Fecal Calprotectin was over 400. Her white count was up front last blood work as well as her platelets.
So, we are proceeding with getting the Humira approved. She will have an MRE on April 15th and most likely her loading dose that same day.

 

[my little penguin]

Humira takes 3-5 months to become effective so weaning at 6 weeks could be a problem
Remicade takes 6 weeks to become effective so weaning after six weeks makes more sense
I would ask about weaning steriods at 6 weeks since your going with humira

 

[buchanaj]

We won't start weaning her until she has completed both loading doses. At best, she will be off steroid 3 months into her Humira treatment. If she starts having problems, we will slow definitely slow down the taper.

I'm just so darn eager for something to work. Feel like we've been taking one step forward and two back!

 

[my little penguin]

Takes about a year after dx sometimes two to get to normal again

 

[ronroush7]

We won't start weaning her until she has completed both loading doses. At best, she will be off steroid 3 months into her Humira treatment. If she starts having problems, we will slow definitely slow down the taper.

I'm just so darn eager for something to work. Feel like we've been taking one step forward and two back!

Sending support.

 

[Jacksik]

The wait,,,

 

[buchanaj]

Takes about a year after dx sometimes two to get to normal again

I'm having to learn a lot of patience these days!

 

[crohnsinct]

Sounds like a plan to me!

However, in case others are reading this, I wanted to add that if the docs concern is steroids then EEN would have been an option if you wanted to try immunomodulators first. I am in no way pushing the use of immunomodultators but wanted to put this out there.

For O she was on steroids for 4 months and steroid dependent. We switched to EEN to get her off steroids and to help manage her disease while we waited for the Remicade to be able to handle the disease on it's own. EEN worked great.

For my younger daughter we also used EEN instead of steroids while we waited for the Methotrexate to get to therapeutic levels...about 12 weeks (6-8 exclusive then slow reintro).

I am glad you had a good appointment. Patience is a virtue! One I don't have!