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Crohn's Disease Forum » Treatment » Humira/Adalimumab » Humira dosing in 8yr old/freaking out


 
02-16-2017, 11:02 PM   #1
nelsonshan
 
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Humira dosing in 8yr old/freaking out

My 8yr old son failed Remicade today (2nd infusion reaction), and now they want to start Humira as soon as it's approved by ins.
They are talking about starting at 160mg, then 80mg in 2w, then 40mg in 2w, and every week thereafter. This is adult dosing. They are trying to avoid antibody formation. He is only 66lbs. In doing some of my own research, this is double what he should get. I am so nervous. Is anyone else in this same boat?? I am also so scared of what happens if he fails this too. What is next when you are only 8 years old??
02-16-2017, 11:12 PM   #2
Trysha
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Thankfully I am not in your position but feel sure others will soon be along with their views to help you.
You do have a right to an explanation with regard to the dosage
You could gently express your concerns about such high dosage and ask if that is the usual amount for an 8 yr old in these circumstances.
Feel better soon
Trysha
02-16-2017, 11:30 PM   #3
Maya142
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My daughter was 90 lbs when she started Humira. She also did that loading dose and then was on 40 mg weekly.

She was not 8 though- she was a teenager. She did really well on Humira - it took a while to work, but when it did, it was like magic.

There are options after you fail Humira. My daughter is now going to start Entyvio. There is also Simponi (another anti-TNF), Cimzia (another anti-TNF) and recently Stelara was approved (an IL 12 and 23 inhibitor).

Also, I know you're worried because he reacted to Remicade, but kids often react to Remicade and don't have that problem with Humira. It's because of the mouse protein in Remicade.

Many kids last YEARS on Humira - my older daughter has been on it for 4 years now.

Hang in there!!
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Mom of M (20)
diagnosed with Crohn's Disease at 16
Juvenile Idiopathic Arthritis at 12
Juvenile Ankylosing Spondylitis at 16

Mom of S (23)
dx with JIA at 14
Ankylosing Spondylitis at 18
02-16-2017, 11:33 PM   #4
GI Jane
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I'm sorry Humira is so painful to give at least for me it was. Try warming it up before hand.

Entivivo is working great for me right now. Remicade didn't work for me. Thoughts and prayers for your little man.
02-17-2017, 09:22 AM   #5
my little penguin
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My kiddo was 9 when he started humira and did not do the loading dose since he had Been on remicade for 8 months prior -big mistake it took 5-6 months to work
Also started at 20 mg every two weeks - since that was the "kiddie dose "
Again didn't work had to switch to the "adult dose " after two months (part of the 5-6 months to work which meant steroids again )

He was also close to 66 lbs around that time



Dosing for 66 lbs is 40 mg per drugs dot com


Patients
(2 years of age and older) Dose
10 kg (22 lbs) to <15 kg (33 lbs) 10 mg every other week
(10 mg Prefilled Syringe)
15 kg (33 lbs) to <30 kg (66 lbs) 20 mg every other week
(20 mg Prefilled Syringe)
≥30 kg (66 lbs) 40 mg every other week
(HUMIRA Pen or 40 mg Prefilled Syringe)
From

https://www.google.com/amp/s/www.dru...?client=safari



So not double dose what he is suppose to be

He is exactly at the weight for 40 mg

Ds is 13 (100 lbs now ) and gets 80 mg a week or 160 mg every two weeks. Since he takes it every 5 days

I know it's confusing when they say kiddie dose vs adult dose

Remember this is used a lot for JIA in toddlers
As well
It has a long safety record in children
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02-17-2017, 09:48 AM   #6
my little penguin
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As far as next if humira doesn't work
Big IF since you stated remicade was working

Cimzia
Simponi
Stelera
Entivyio
Are all used for Crohns

Fingers crossed
I know it's hard we had the same panic close to 4-5 years ago when Ds failed remicade at 9 from an allergic reaction
And had to switch to humira
02-17-2017, 10:42 PM   #7
pdx
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It does seem like 40mg is OK for your son, since he's 66 pounds. But giving it every week seems like a lot to me, especially since it's a painful shot. I understand your doctor's worry about antibody formation, but as Maya said, lots of people who develop antibodies to Remicade do well on Humira.

If your doctors are convinced that every week is best, I would at least talk to them about the possibility of eventually trying to stretch out the time between doses back to the usual 2 weeks, once you see if your son responds well to it.
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Daughter E (15) dx with Crohn's 12/18/14 at age 12

Current treatment:

Remicade started 12/24/14 (currently on 9 mg/kg every 6 weeks)
Oral methotrexate restarted 12/2/16 (15 mg weekly)
vitamin D, folic acid, multivitamin, Prozac

Past Treatment
90% EN via NG tube 2/9/15 - 4/2/15
50% EN via NG tube 4/3/15 - 4/18/15
Supplemental EN via NG tube 5/7/15-6/19/15
Budesonide 3/3/15-6/30/15
Oral methotrexate 3/13/15 - 5/14/16 (15 mg weekly)
Topical clobetasol for Remicade-induced psoriasis
02-18-2017, 07:33 AM   #8
Maya142
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Generally most doctors will start with every other week and will only go to weekly when the kiddo isn't responding to every other week.

We did that - the first time my daughter was on Humira (she's been on it twice), we started at every other week, then went to one shot every 10 days and then finally weekly. Weekly worked best for her.

It was a very long process, and it took her 6 months to respond to Humira. Your doctor might want to start with weekly so he responds quickly.

But I agree with what pdx said, maybe once he is in remission, they will be able to stretch the interval between shots to every 2 weeks.
02-18-2017, 07:53 AM   #9
my little penguin
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We started every two weeks for about a year
Then switched to every 10 days for 6-8 months or so
Then once a week for about a year
And he has been on every 5 days for 6 months so far

So very slow increase
They also added mtx increases slowly during those times
02-19-2017, 06:42 PM   #10
nelsonshan
 
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For those that are using Humira - how often are the blood tests? We were getting them with each Remicade infusion, but now wondering how often the tests will be?
02-19-2017, 06:55 PM   #11
my little penguin
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Blood tests every 3-4 months
Basically right before GI appts
We did have them
More often for a bit when they added mtx or upped mtx
But standard every 3-4 months at first as long as Ds is stable
02-21-2017, 07:27 AM   #12
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Everyone seems to be on Humira with mtx. I noticed in the package insert it says to tell the Dr if you are currently taking imuran. They are planning to continue the Imuran with the Humira. Wouldn't it be the same issue with the immunosuppression as with mtx? Do you guys think the imuran and Humira is ok?
02-21-2017, 09:30 AM   #13
Maya142
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It's ok to take Imuran with Humira. The reason kids are on MTX is that they found that the cancer risks are slightly higher with Imuran. Many GIs now think MTX is safer, particular for adolescent boys, so kids are being put on MTX with biologics.

This presentation explains the risks and benefits of various drugs very well: http://programs.rmei.com/CCFA139VL/

The scary kind of cancer associated with Imuran/6MP and a biologic - Hepatosplenic T-cell Lymphoma is very, very rare. But it was found mostly in teenage/young adult boys who had been on both Imuran/6MP AND a biologic. So now GIs are trying to avoid that combination if possible.
02-21-2017, 09:46 AM   #14
my little penguin
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Our GI and rheumo will not prescribe imuran and biologics together due to T cell lymphoma risk period .
We were looking at switching out mtx for imuran to deal with Ds Sweets Syndrome
They both stated it was too risky and would not do it

Ds has been on mtx with humira for a long time 3 plus years with four years on humira total .
02-21-2017, 05:09 PM   #15
nelsonshan
 
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Do your kids still get premeds before Humira injections?
02-21-2017, 06:18 PM   #16
Maya142
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No - my girls never got premeds with Humira. We just iced before the shot (to help with the pain of the injection).
02-21-2017, 06:30 PM   #17
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Im still worrying about the dose they want to use. He is only 30kg and wants to use 160, then 80, then 40, then 40 every week. This seems way too high.
I'm going by this:

For reducing the signs and symptoms and inducing and maintaining clinical remission of moderate to severe Crohn's disease in patients who have had an inadequate response to conventional therapy:
NOTE: Adalimumab may also be used for reducing the signs and symptoms and inducing clinical remission in adult patients if they have lost response to or are intolerant to infliximab.
NOTE: Adalimumab may be given with aminosalicylates, corticosteroids, and/or immunomodulatory agents such as 6-mercaptopurine and azathioprine.
NOTE: Adalimumab receipt for greater than 1 year has not been evaluated in controlled clinical trials.
Subcutaneous dosage:
Adults: 160 mg subcutaneously given as 4 injections on day 1 or 2 injections each on days 1 and 2, then 80 mg subcutaneously at week 2 and 40 mg subcutaneously every other week starting at week 4. Receipt of 160 mg subcutaneously at week 0 and 80 mg subcutaneously at week 2 led to a Crohn's disease activity index score of 150 or less at week 4 in 36% of patients, as compared to 12% of placebo recipients (p=0.001).[33075] In a follow-up study, patients got adalimumab 40 mg subcutaneously at week 4 and 6 and patients who were in remission at week 4 and week 8 were randomized to get adalimumab 40 mg weekly (n=18), 40 mg subcutaneously every other week (n=19), or placebo (n=18) through week 56. The percentage of patients in remission at week 56 was 83% for the weekly group, 79% for the every other week group, and 44% for the placebo group.[33076]
Children and Adolescents >= 6 years and weighing >= 40 kg: 160 mg subcutaneously (given as four 40-mg injections on day 1 or as two 40-mg injections on days 1 and 2), then 80 mg subcutaneously 2 weeks later (on day 15). Begin maintenance dosing of 40 mg subcutaneously every other week starting at week 4 (day 29).[27939]
Children and Adolescents >= 6 years and weighing 17 to < 40 kg: 80 mg subcutaneously (given as two 40-mg injections on day 1), then 40 mg subcutaneously 2 weeks later (on day 15). Begin maintenance dosing of 20 mg subcutaneously every other week starting at week 4 (day 29).[27939]

Any thoughts?
02-21-2017, 08:27 PM   #18
my little penguin
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I think you need to trust your doctors on this a lot of Tunis tiny kiddos with jia use humira at high doses .
Ds has been on an extremely high dose for an adult let alone a kid for almost a year

6-mp gave him way more issues than any biologic

And injectable mtx also gave way more issues

Standard protocol doesn't typically "fit " pediatric Crohns
A lot of kids are on 10mg/kg every 4 weeks for Crohns
But that isn't the adult standard of 5 'mg/kg every 8 weeks

Some kids will need higher doses and your child doctors are basing dosing what they saw in your child's test results and their exp with the drug

Please ask them what concerns you have over the dose

But the humira box has your child's weight at the adult dose (it's in my fridge )
So please try not to worry
Easier said then done
02-21-2017, 08:35 PM   #19
Maya142
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My kiddo was given the same loading dose. She was older but she has been on very high doses of multiple biologics.

For example, with Remicade, the standard dose is 5 mg/kg every 8 weeks. She was quickly moved up to 7.5 mg/kg every 5 weeks. Then 10 mg/kg every 4-5 weeks.

Then later for a juvenile arthritis study, she was given "high dose Remicade" 20 mg/kg every 4 weeks. That is 4 times the normal dose and twice the normal frequency.

They were using that dose on younger kids with juvenile arthritis too.

She did not get any infections or have any side effects with ANY biologics (she's been on 5 biologics). She had a much harder time with Methotrexate side effects (nausea) and Imuran (infections).

Talk to your doctors if you're not comfortable. You could even get a second opinion. A second set of eyes sometimes really helps to confirm what your doctor is doing is right.
02-24-2017, 09:39 AM   #20
nelsonshan
 
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We had the first Humira yesterday. We found out his Remicade level was <1 and his antibiodies to it was 613, which they said was thru the roof. So, that is why they want to do the higher doses of Humira on him, to try to prevent antibody formation.
It was a little traumatic, it burned super badly for him, but he survived. Hopefully it'll only be better from here on out as he'll only need 80 next time, so he won't get it in both arms. I appreciate all of the support from you guys!
02-24-2017, 09:45 AM   #21
GI Jane
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Poor little man.....our thought and prayers are with you. Can they put lidocaine on his arms ahead of time to help with IV pain? The medicine pain wouldn't help I guess though...video game for him to play to distract brain.
02-24-2017, 09:54 AM   #22
nelsonshan
 
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I asked about that, and they said the needle is so little, and that's not what hurts. It's the medication dispersing that's painful, and there isn't anything to help with that.
One thing that I am concerned about, given his major reaction to the Remicade, was when I asked about having an epi-pen at home for when I do the injections on my own, in case he starts having an allergic reaction. The dr kind of blew that off, saying we'd need to take him to the local ER, because it's really steroids he would need and not epi. I'm worried about getting him somewhere in time if something were to happen. Any thoughts?
02-24-2017, 10:06 AM   #23
GI Jane
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I asked about that, and they said the needle is so little, and that's not what hurts. It's the medication dispersing that's painful, and there isn't anything to help with that.
One thing that I am concerned about, given his major reaction to the Remicade, was when I asked about having an epi-pen at home for when I do the injections on my own, in case he starts having an allergic reaction. The dr kind of blew that off, saying we'd need to take him to the local ER, because it's really steroids he would need and not epi. I'm worried about getting him somewhere in time if something were to happen. Any thoughts?
They always gave me benadryl with this medication. Will wipe the poor guy out but maybe that's not a bad thing.
02-24-2017, 11:30 AM   #24
Maya142
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That's actually not true - with an allergic reaction, only epinephrine can stop it. Benadryl will only reduce the symptoms, it won't actually stop the reaction.

I'm going to tag my little penguin, because I don't know much about allergies.

Humira does hurt. It's not the needle, like you were told, it's the medication. Poor kiddo. We usually injected in my girls' thighs. We tried to distract them - had the TV on or asked them questions, to take their minds of the pain. And we always did a treat afterwards - something with chocolate .

There is supposed to be a new formulation of Humira that will not burn - it should be here some time this year. It's already being used in Europe. Hang in there!!!
02-24-2017, 12:53 PM   #25
my little penguin
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Yeah common misconception even among ER docs
Kids with life threatening food allergies hear it ALL.THE.TIME

You can ask for a script to add lidocaine to the humira syringe
We do this for ds it lowers the burning some
Using lolllipops during -sugar lessens pain signals
Asking thought proking questions
The concentration causes the brain to be "busy" and ignore some of the pain

Your ped can prescribe an epi pen

after giving it then calling 9-1-1
Ask for ambulance with advanced life support and epi on board
They don't all carry it and some need two

Thankfully we have an allergist who tells the other docs what can happen and epi at home


Steriods don't stop an allergic reaction they just slightly slow it down sometimes
Epinephrine is the first line of defense for an allergic reaction(think pilot in a plane crash )
Benadryl is the flight attendant just there for comfort
Ben
02-26-2017, 06:59 AM   #26
nelsonshan
 
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So, they say he was reacting to the Remicade because of the antibodies. So this is or isn't an allergic reaction? I'm kind of confused about the whole thing. But if that reaction happens with the Humira (flushing, chest tightness, vomiting, low bp, etc..) and I'm just at home with him, I'd want to do Epi, right before I get him to the ER?? I'm going to need to get one somehow...
02-26-2017, 08:16 AM   #27
my little penguin
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In food allergies your body produces IgE (antibodies ) to the protein in food this causes the immune system to react.
So your body needs to have seen the protein in order to build antibodies to react in drugs
Food is different since you can react the first time

Remicade has murine (mouse based ) protein and has a much higher reaction rate because of this
Typically on the 3 or 4 infusion.

Humira is humanized based protein so the risk of allergic reaction is very small.
Similar to giving your child Tylenol or amoxicillin or any other common drug .

The difference is now you know what an allergic reaction looks like
Parents are taking that risk daily by feeding or giving their children medicine
But the risk is extremely small since reacting to a drug is rare (except certain ones like remicade )

Ds is different in that he didn't react to just remicade
He reacted to iv contrast dyes, barium and other drugs used in MRE and CTE,
He reacts to any stinging /biting insects/bugs
He reacts with life threatening reactions to foods
He also reacts to pollens animals etc..,

So he is a very ATOPIC or reactive kid and docs watch closely for reactions
Hence the epi pen at home and with him always


He has had injection site reactions to humira and a few satellite hives before
But nothing further and has received humira for four years .

Talk to your child's doctors about your concerns
Explain logistics
Your avg emt takes x amount of time to get to your house and y amount of time to the hospital - is that too long for a breathing issue or to lose consciousness (90% who lose consciousness are fatal with anaphylaxic shock )

Bring peer reviewed articles vs "mom" talk
http://emedicine.medscape.com/article/135065-medication

http://acaai.org/allergies/anaphylaxis


https://www.aaaai.org/conditions-and...ry/anaphylaxis

https://www.aaaai.org/conditions-and...rgic-reactions

http://patient.info/doctor/anaphylax...-its-treatment

https://www.allergy.org.au/health-pr...xis-guidelines


This is what parents of kids who react to food or insects etc are given to watch to signs of anaphylaxis and when to give the epi as instructed by their child doctor

The doctor determines what is right for the child

Every child is different

https://www.foodallergy.org/file/eme...-care-plan.pdf


Hope that helps
02-26-2017, 08:22 AM   #28
my little penguin
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To answer your question if you have an epi pen your child doctor should tell you when to give it and what to do

For ds and most kids with food /insect/drug allergies
We follow the food allergy action plan for signs of anaphylaxis
Then immediately give the epi pen followed by a call to 9-1-1

Without having an epi pen - if you child is reacting call 9-1-1 right away
So they can get care before they reach the hospital faster
Realize that only some the emt can care and administer the epi pen each state county etc... is different on what is permitted
But an ambulance is still faster/safer than driving your child who is reacting
02-27-2017, 01:43 PM   #29
nelsonshan
 
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I'm just trying to get clarification on whether the reaction he had to the Remicade was "allergic" or due to the "antibodies", or if they are one in the same. He is also allergic to everything environmental, and peanuts, treenuts, soy, carrot, raspberry. But with the foods he doesn't rash, hive, or get anaphylaxis. He constantly rubs his eyes, and they feel it was aggravating his crohns (his stomach is the worst of the areas). So we never got an Epi-pen. I will see if his ped will give us one if the GI dr won't when it's time to inject at home.
02-28-2017, 09:02 AM   #30
my little penguin
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Confused with your statement "on he reacts to foods but .."

Here is a link on food allergies
If he has IgE mediated food allergies then he should have an epi pen
If he has non IgE Food intolerances (not allergies ) then you just avoid but do not worry about anaphylaxis

Past food allergy reactions are not predictive of future ones

Does he see a pediatric allergist ?

Just like you wouldn't let your sons pediatrician handle his Crohns
An allergist is needed to handle allergies

Here are some resources in the difference for food allergies
Vs intolerance


Ds has both so I can understand the confusion
If he has antibodies to remicade it's still an allergic reaction
The antibodies cause the body to have an allergic reaction to remicade

http://www.kidswithfoodallergies.org...gy-topics.aspx


http://www.kidswithfoodallergies.org...diagnosed.aspx


http://www.kidswithfoodallergies.org...allergens.aspx


http://www.kidswithfoodallergies.org...aphylaxis.aspx
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