Remicade Dosage Question

[youngkidsmom]

Hello Everyone,

I had a question regarding the Remicade dosage that is being given to my teenage son. He recently turned 14 and is around 49 kg. He is being administered 500 mg of remicade every 8 weeks.

What I saw on the internet is that the standard dosage is 5mg/kg. Ever since he was started on Remicade (when he was 8ys old), he has been responding well to it.

But I was a little confused to see why he has been prescribed the maximum dosage? I have emailed his doctor but have yet to hear back.

Thank you.

 

[my little penguin]

Kids need to have higher than standard dose
High dose is actually 10 mg/kg every 4 weeks
10 mg/kg every 8 weeks is not high dose

my kiddo was on 7.5 mg/kg every 6 weeks at age 8

his humira dose from 40 mg every 14 days standard adult dose at age 9
To end at 40 mg every 5 days at age 13

he now takes Stelara 90 mg every 4 weeks
He has been on this for 4 years and is 17

kids just burn through it faster

if iT’s working that’s the big battle
We keep things status quo when it’s working
It’s very hard to find meds that work for kids

so if it’s working for him
That’s half the battle
Also realize puberty and crohns is a bear
Keeping things controlled through puberty is extremely difficult

 

[youngkidsmom]

Thank you so much for your response.

Also wanted to add that I am a regular visitor of this forum (but this is my first post) and have always found your responses very helpful.

 

[Maya142]

Honestly, dosing can vary. It really depends on the kiddo. Severe inflammation requires a higher dosage. But as said above, growing kids also metabolize drugs faster than adults and very often need more frequent infusions or higher doses or both. My daughter has always needed really high doses of biologics - we started at 5 mg/kg of Remicade every 4-5 weeks when she was diagnosed at 16, but soon went up to 7.5 mg/kg and then 10 mg/kg every 4 weeks.

That worked very well for her Crohn's but she has severe inflammatory arthritis in addition to Crohn's and that was not controlled on 10 mg/kg so she was eventually put on experimental "high dose Remicade" - up to 20 mg/kg every 4 weeks. I was terrified she'd get infections but she was absolutely fine! The "high dose Remicade" kept both diseases in check for a while - her arthritis was mostly controlled for a while and her Crohn's was very well controlled. Once Remicade failed for her arthritis, we had to move on to other biologics.

She has been on 9 biologics due to her arthritis and Crohn's and has always needed a really high dose, whatever the biologic. For example, she's currently on Cimzia for her Crohn's and though her Crohn's is in the mild to moderate range, she needs the maximum dose of Cimzia - 400 mg every 2 weeks.

I'm going to tag @crohnsinct since she can explain the need for higher doses of Remicade better than I can!

 

[youngkidsmom]

Thank you Maya for sharing. Yeah, I think they increased his dose since he is going through puberty and to make sure his growth is normal.
I was also wondering if the dosage given to a patient can vary depending on the doctor's approach towards treating the patient. My son's doctor did mention very early on that she has a top down approach. I do trust her a lot, but couldn't help wondering if it was even necessary to give him this dosage.

His remicade levels have always been good as well. I am still waiting to hear back from his doctor which is a bit unusual since she is usually very fast in responding.

Thank you again.

 

[my little penguin]

We all want the least amount of meds for our kiddos
And most parents (me here included ) would LOVE for our kids to follow the literature and be able to just do Een or simple Pentasa or few methotrexate pills (with no side effects )
So while it may seem excessive to you and most adults it probably is

We have seen first hand what lower a dose can do
Quickly not in a good way

Insurance decided in March my kiddo needed to proved yet again that every 8 weeks of Stelara did not work for him
He had proven this once a few years ago
Doc begged and pleaded not to force the issue
After all he had been doing really really well for years
And 8 weeks was the standard dose per insurance/fda

Gi had Ds try 6 weeks just once
I was hopeful since all the papers stated it should work ….
Crohns started to mildly flare /fecal cal which had been 15 or less for years jumped over 150 and joints (arthritis) became active again
He has had two doses at every 4 weeks and is slowly getting back to baseline
I would have hated to see multiple times at 8 weeks

 

[Maya142]

Honestly, in our experience better top down than bottom up. We tried the bottom up approach for my daughter’s arthritis and she ended up with a lot of joint damage, chronic pain, surgeries and very hard to control disease. So for her Crohns we did the opposite and hit it hard with Remicade and MTX. It worked. She has avoided severe Crohn’s and complications like abscesses, fistulas and strictures.
You can always try slowly decreasing dose once he has been stable for a while - many doctors use the top down approach to get the disease under control quickly and then are able to reduce doses/frequency of the infusions over time. It doesn’t always work, but for some kids it is possible. My kiddo has not been so fortunate but some kids are. Usually it’s done quite slowly and only if the patient meets the right criteria - if it’s very aggressive disease for example, they may prefer to leave things as they are if a child’s doing well. There are a variety of approaches and it really depends on the child and his or her disease and their GI’s preferences.

 

[Jo-mom]

Hi, I just wanted to share my son's experience with dosing or Remicade. He started with the 5 mg/kilo every 8 weeks but right off the bat, it wasn't enough and it was increased to 5 mg/4 weeks. Again, that wasn't enough and it was brought up to 10 mg/4 weeks. After 6 months on this higher armount, his levels were at a 10 and so the GI kept him on the 10mg/4 weeks. The next level test which was done a year later, indicated levels of 28 and he was brought down to 5 mg/4 weeks. Just had another level test 6 months after the last one and the GI just indicated that he is now on the 5 mg/8 week dose. When he first started, he was very inflammed and age 19 - he was metabolising so quickly. So it does happen but my son definitely needed that very high dose for awhile. Anything lower wouldn't have cut it.

 

[crohnsinct]

Hi there and welcome out of the shadows

Was your son previously on 5mg/kg every 8 weeks and just now bumping up to 10mg/kg or are you just now noticing that his dosage is 10mg/kg?

If he is suddenly being bumped up and has had no clinical changes I would also be curious to know why the change. Are his lab values all stable and in range? Specifically calpro? You already mention that Remicade levels are good? Do you mind me asking what they are?

It could very well be that his levels are low good and heading into puberty your GI is being proactive and getting ahead of things.

Are you in the US? There seems to be a lot of funky stuff going on with Remicade dosing approvals (my daughter T got caught up in that mess and many GI’s are tweeting on medtwitter about the snafu’s) so perhaps insurance is driving this decision as well. Maybe your GI is trying to get ahead of insurance changes?

Keep us posted on what you find out.

 

[crohnsinct]

Oh and wanted to add btw that while with many drugs side effects and risks increase with dosage so far that has not been shown to be the case with Remicade. Even with my daughter’s paradoxical psoriasis they thought decreasing dose might help but it never did. But I get it, we do still like to have the least amount of meds go through their bodies as possible because you never know. But at least the studies should put you at ease there.

Also, the increase could be to try to avert antibody formation just as much as disease control.

Can’t wait to hear what the GI has to say. And don’t you just love it when they spoil you with quick responses and then take a normal amount of time to respond. Grrr

 

[Lisa]

I too am interested to hear why the change in dosage (if it is a change).....I've been on 5 mg/kg from the start, although that isn't exact since my weight has changed over the years...but my total dosage has increase from 400mg per infusion to 500mg per infusion to account for the weight gain.

Oh and wanted to add btw that while with many drugs side effects and risks increase with dosage so far that has not been shown to be the case with Remicade. Even with my daughter’s paradoxical psoriasis they thought decreasing dose might help but it never did. But I get it, we do still like to have the least amount of meds go through their bodies as possible because you never know. But at least the studies should put you at ease there.

Also, the increase could be to try to avert antibody formation just as much as disease control.

Can’t wait to hear what the GI has to say. And don’t you just love it when they spoil you with quick responses and then take a normal amount of time to respond. Grrr

Hmmm.....my doctors have NEVER given an indication that what I developed is paradoxical psoriasis...they just call it a 'rash' and 'unknown cause'.....I just did a search and all my symptoms match exactly....still not bad enough to give up the Remicade though.

 

[my little penguin]

@Lisa
My kiddo developed “rashes “ while on remicade
He saw a dermatologist who stated it was her job to keep his skin happy while allowing him to stay on remicade .
Definitely see a derm -most can minimize /dx the rash and still keep remicade

 

[Lisa]

@Lisa
My kiddo developed “rashes “ while on remicade
He saw a dermatologist who stated it was her job to keep his skin happy while allowing him to stay on remicade .
Definitely see a derm -most can minimize /dx the rash and still keep remicade

I see a derm regularly...actually switched a couple years ago to a more convenient one (closer to home).....for now we treat the rashes as needed (couple of different creams) - and hope nothing flares up too badly!

 

[pdx]

I see a derm regularly...actually switched a couple years ago to a more convenient one (closer to home).....for now we treat the rashes as needed (couple of different creams) - and hope nothing flares up too badly!

@Lisa: my daughter developed psoriasis on her scalp (especially behind the ears) after she started Remicade. Adding methotrexate completely eliminated the psoriasis.

 

[crohnsinct]

@Lisa have you noticed if your flares of the rash coincide with infusions or if it got worse when they increased dose? If so, then probably Remicade induced.

O’s psoriasis is horrendous. It is over 80% of her body It is so bad people stare and her scalp doesn’t even look human. But just like you, she is willing to put up with it if it keeps her Crohn’s happy.

 

[Lisa]

@Lisa have you noticed if your flares of the rash coincide with infusions or if it got worse when they increased dose? If so, then probably Remicade induced.

O’s psoriasis is horrendous. It is over 80% of her body It is so bad people stare and her scalp doesn’t even look human. But just like you, she is willing to put up with it if it keeps her Crohn’s happy.

The rashes don't seem to have a rhyme or reason as far as severity - except if I go too long between application of steroidal cream....they have pretty much 'settled' to the following locations, with occasional other spots;
top of crease of buttocks
under breasts (both sides)
along c-section scar/crease
inside belly button

see a theme here?

When I first started having issues, I also had problems behind my ears and into my scalp - large patchy flaky gross stuff.....also inside my ears for a while - which necessitated me seeing a doctor to get my ears regularly cleaned out as it was too much for me to do. Thankfully that hasn't reappeared!!!

I get random other spots, including on my ankles/feet, and have had pustular outbreaks in the past on my feet/hands but not for a while.

 

[Maya142]

@crohnsinct Poor O!! It's too bad that neither of her biologics addresses the psoriasis. She is one tough kid.

 

[Maya142]

@Lisa Have you ever looked up inverse psoriasis? It shows up in the spots you mentioned...

 

[youngkidsmom]

Hi there and welcome out of the shadows

Was your son previously on 5mg/kg every 8 weeks and just now bumping up to 10mg/kg or are you just now noticing that his dosage is 10mg/kg?

If he is suddenly being bumped up and has had no clinical changes I would also be curious to know why the change. Are his lab values all stable and in range? Specifically calpro? You already mention that Remicade levels are good? Do you mind me asking what they are?

It could very well be that his levels are low good and heading into puberty your GI is being proactive and getting ahead of things.

Are you in the US? There seems to be a lot of funky stuff going on with Remicade dosing approvals (my daughter T got caught up in that mess and many GI’s are tweeting on medtwitter about the snafu’s) so perhaps insurance is driving this decision as well. Maybe your GI is trying to get ahead of insurance changes?

Keep us posted on what you find out.

Hi there!

On our Jan visit, the Remicade bag noted 450 mg, but that was changed to 500 mg in our last visit in July which caught my attention. When I calculated that to be a bit more than 10mg/kg, I asked one of the nurses there and they said they had rounded it up to 500 mg as was the usual practice (his weight was 49 kg). I tried to go through MyChart to see if they had always given him 10mg/kg, but since I only have proxy access, it doesn't show me that detail. For my son to get full access, we have to go to the GI's office it seems.

I started having questions when I saw online that the usual dosage is only 5mg/kg. But he is going through puberty, so that must have been the reason for the higher dosage.

His last IFX level was taken in the end of last year and was 10.5 and the doctor said was meeting their expectations.

We are in CA.

Thank you

 

[youngkidsmom]

I had one more question please - my son turned 14 not too long back and his BMI is 17.18. He seems to be the skinniest kid in his group. He refuses to drink any protein shakes and doesnt like any natural food high in calories like avacados, nut butter, olive oil, milk, cheese etc. The doctor is not worried about his weight, but I would be happy if he could gain at least 5 more pounds.

We are vegetarians. Are there any weight gain supplements in powder form (he doesn't prefer drinking any shakes) etc which are safe to give to kids?

Thanks in advance.

 

[my little penguin]

Did he have inflammation in the duodenum??
High fat foods can make you feel full faster
In my kiddos case they inflammation in the duodenum caused mild gastroparesis
Which means his stomach takes longer than normal to empty and high fat foods like milk cheese avacados etc make him feel nauseous
He takes meds to increase emptying rate

Did they check for lactose intolerance?
Has he tried vegan shakes from orgain ?
My lactose intolerant kiddo (non ibd kid)
Hates most of the things you listed and did not like shakes due to lactose intolerance


Also helps when you treat shakes like meds versus food
My kiddo has been on some type since age 7
He got to pick what kind
Gi gave us a ton to try
We followed the infant feeding method
Most foul tasting first (elemental amino acid )
Then semi elemental
Then polymeric
By time he got to polymeric - he thought it was dessert

use straws to by pass taste buds and make them very cold

ask Gi if you could add ensure powder to his meals
Mixed in

for my kiddo at 17 he knows shakes are not optional - 2 a day everyday
Carnation instant breakfast is his current choice
He was on neocate jr choc for about 3-4 years abd peptamen jr prior to that

 

[Lisa]

@Lisa Have you ever looked up inverse psoriasis? It shows up in the spots you mentioned...

Yes - I have, can't get a definitive diagnosis on it though.....and strangely enough, it has been quite 'quiet' the last couple of weeks without me having to use creams.....at least it is giving my skin a break. Until the next flare up!

 

[Maya142]

Our GI recommended Duocal which is a powder to gain weight. It didn't really work for my daughter though. My daughter ended up trying to drink formula to gain weight but was unable to drink enough to gain weight or actually even maintain her weight. At that point she was severely underweight so was tried an NG tube (feeding tube inserted through her nose into her stomach) which sounds a whole lot scarier than it actually is. She inserted it every night, did feeds overnight and removed it before school in the morning, so no one had to know! Her GI was pretty firm about formula - said she could drink it or use an NG tube but she needed it to gain weight.
I'm going to tag some other parents whose children have used formula to gain weight: @Tesscorm, @crohnsinct and @pdx.

 

[Tesscorm]

Sorry, it's taken a while for my to reply... hadn't seen the tag.

My son lost approx. 20-25 lbs while he was sick, pre-diagnosis. He went from ~145 to 120 lbs. He started the formula just as he turned 17.

It's been quite a few years but, if I remember correctly, he did 6 weeks of exclusive EN (formula only) and gained only 6 lbs (but he was also very active, playing hockey 5x per week plus taking two phys.ed. classes per day). During the EEN period of six weeks, he was was taking in 3000 calories/night (he used an NG tube and ingested formula overnight only - during the day, he was allowed broth, clear fluids, popsicles, etc.). Once he was able to add back food, he gained another 10-15 lbs over the next three months However, while he added back a fairly regular diet, he continued with the formula at 1/2 dose, 5 nights per week (ie 1500 cal/night). He continued with the supplemental EN for approx. 2 years (until he left to go to university).

I believe over the next year or two, he actually reached 160 lbs! However, keep in mind, over these two years, he also matured physically - this may have been a factor in the weight gain??

While he was ingesting the formula through the NG tube, he was using Tolerex (Nestle). When he went to university, he did not want to take the NG tube, pump, etc. but he did agree to continue drinking Boost shakes as a nutritional 'boost'. He was drinking two per day (approx.500-700 calories/day). He very much believed the protein/nutrition he gained from both the Tolerex and Boost helped him build 'muscle' when working out (IDK?? but he believed it and it kept him committed to the shakes!).

He's now 27! and his weight has been fairly stable at approx. 180-190lbs for the past ~6 years. He still continues to drink shakes regularly, they've become part of his lifestyle and, since being away at school, he's used them as a convenient breakfast and snack between classes, games, etc.... (one thing to mention, if the shakes replace a meal, they won't add calories to the day's total... whenever possible, they should be an addition, not replacement, to meals when trying to gain weight).

Hope this helps!

 

[Jbungie]

Sorry, it's taken a while for my to reply... hadn't seen the tag.

My son lost approx. 20-25 lbs while he was sick, pre-diagnosis. He went from ~145 to 120 lbs. He started the formula just as he turned 17.

It's been quite a few years but, if I remember correctly, he did 6 weeks of exclusive EN (formula only) and gained only 6 lbs (but he was also very active, playing hockey 5x per week plus taking two phys.ed. classes per day). During the EEN period of six weeks, he was was taking in 3000 calories/night (he used an NG tube and ingested formula overnight only - during the day, he was allowed broth, clear fluids, popsicles, etc.). Once he was able to add back food, he gained another 10-15 lbs over the next three months However, while he added back a fairly regular diet, he continued with the formula at 1/2 dose, 5 nights per week (ie 1500 cal/night). He continued with the supplemental EN for approx. 2 years (until he left to go to university).

I believe over the next year or two, he actually reached 160 lbs! However, keep in mind, over these two years, he also matured physically - this may have been a factor in the weight gain??

While he was ingesting the formula through the NG tube, he was using Tolerex (Nestle). When he went to university, he did not want to take the NG tube, pump, etc. but he did agree to continue drinking Boost shakes as a nutritional 'boost'. He was drinking two per day (approx.500-700 calories/day). He very much believed the protein/nutrition he gained from both the Tolerex and Boost helped him build 'muscle' when working out (IDK?? but he believed it and it kept him committed to the shakes!).

He's now 27! and his weight has been fairly stable at approx. 180-190lbs for the past ~6 years. He still continues to drink shakes regularly, they've become part of his lifestyle and, since being away at school, he's used them as a convenient breakfast and snack between classes, games, etc.... (one thing to mention, if the shakes replace a meal, they won't add calories to the day's total... whenever possible, they should be an addition, not replacement, to meals when trying to gain weight).

Hope this helps!

Did your son play sports thru all this?

 

[Tesscorm]

Yes, for the most part... it was absolutely impossible to convince him otherwise! He started to show symptoms in February and was diagnosed in May. During this time, he was on two hockey teams and was enrolled in his two phys.ed. classes each day. His endurance, speed and strength absolutely took a hit and there were times he couldn't participate at all. But, once he was admitted and started on IV flagyl (EEN started about a week later), there really was a huge improvement. However, it absolutely did take time to rebuild his endurance, speed and strength - gradually, over a few months. Luckily, his competitive hockey league and school league ended by end of June as did his phys.ed. classes, so his sports did lessen over the summer, giving him a chance to heal and gain some weight.

Because of his activity level, I recall his nutritionist felt that was the reason he gained only 6 pounds during the EEN period but, at that time, his IBD clinic didn't have studies/authorization to prescribe more than 3000 cal/day on EEN. And, I was so worried about everything, given it was all new to me, I never even considered doing anything beyond what they prescribed.

 

[youngkidsmom]

Thank you everyone for your responses. When he was younger (back when he used to listen to me ) he used to drink Ensure once a day and that did make a bit of difference in his weight. But he simply cant stand the taste and refuses to have it now.We have tried a few other brands as well but he says cant stand any of them. When I bring up his weight with his GI, she says his weight his ok (he is on the 30th percentile) and that I shouldn't be worried.

I was curious about one more thing which happened recently. We had to go to the ER for what the doctors called a freak occurrence (he had some pain in his chest-he is okay now), so had to get an appointment with his pediatrician after he was discharged.

When I called to make an appointment, we were told that his pediatrician had retired last month. I am honestly shocked that we were never even informed. I liked her so much and she was an excellent doctor, so it really made me very sad so see her go. My question is, is this the usual process, are the doctors not even required to inform the patients if they retire? I would have loved a heads up so I had some time to find a replacement as well as asked her to recommend who we should be seeing.

Thank you.