GI wants to increase Remicade dose

[kernelmom3]

I finally talked to DD's GI today to go over her recent ER visit for her kidney stones. She had her last infusion 2 weeks ago and her Remicade level was 3.8. GI has always told me she'd like to see the number at at least 3 so I was happy with the 3.8. Then she said she's been to a seminar recently and with new studies she'd like to see the number between 5-7. Right now DD does 5 per kilo every 8 weeks (same as DS). She said she doesn't think we need to increase frequency but wants to go up to 7.5 per kilo. We don't have the results on the antibodies yet but those should be back soon.

My question is: isn't 3.8 a good number and close enough to 5 to keep her at 5 per kilo? She just started Remicade 7 months ago and it seems odd to have to already go up to 7.5. DS has been on Remicade for almost two years and has never had any issues. I know every person with Crohn's presents differently but I was hoping since they're siblings she'd have no issues (though he's never had his Remicade levels checked so who knows what his numbers are!). Also, she has no symptoms and labs always look good (aside from some anemia last time). Thanks for any advice/suggestions, etc!

 

[my little penguin]

Not odd to go up at all
Most kids burn through the med faster
The higher the level the less likely for antibodies to form and for the drug to loss effectiveness
Ds went from 5 mg/kg at the loading dose
To 7.5 mg/kg every 6 weeks
So upped dose and frequency
Add in you can't compare kids even if they have the same dx
Btdt
Bith my kids have asthma
At various times they have needed stronger or weaker meds
Sometimes the same brand /type but different doses
It's too easy to think they should only need the same

Good luck with the higher dose
Most notice a difference right away

 

[Maya142]

I don't have two kids with Crohn's but I do have two kids with juvenile arthritis. Both my girls have been on the same drugs. One of them has done very well on anti-TNFs, the other, not so much. One of them needed an extremely high Remicade dose (all the way up to 20 mg/kg), the other needed the standard Remicade dose (5 mg/kg -- for most of her time on Remi). One does great on Methotrexate, the other had horrible side effects on MTX.

The point is, even though they are sibling they respond different. They have arthritis in different joints. My husband has AS too and has managed without an anti-TNF at all. Everyone is different!

Regarding the Remicade dose, my younger daughter (who has Crohn's as well as arthritis) went from 5 mg/kg to 7.5 mg/kg to 10 mg/kg before her Crohn's was under control. We did the dose changes over 6 months or so and did Remicade levels twice. It worked, because 8 months after starting Remicade, her scopes looked MUCH better.

Good luck!

 

[FrozenGirl]

You could ask to up Remi to 6 or 6.5mg/kg if you are really concerned and retest Remi levels.

That said I wouldn't be super concerned about upping it. You can always up the dose and if her levels are super high you could bump it back down a bit.

 

[Tesscorm]

I was just do a bit of research re optimal levels of remicade and it seems 5-8 is the target. I posted an article and CIC posted a chart on S's thread. Here's the link, go to the last page of the thread.

http://www.crohnsforum.com/showthread.php?t=48762&page=19

And, S's dosage was also increased immediately after loading doses. He did his three loading doses and levels were checked the day before his first '8 week' infusion, results showed no remicade and GI moved him to 6 weeks. Checked again and levels were good (can't remember number). He's been at 6 weeks since then. Only his frequency changed, his dose, per infusion, didn't change - 5 mg/kg

 

[crohnsinct]

Actually in our experience 3.8 two weeks after infusion is low. Levels are usually taken right at the end of the cycle to determine how much is left right before the get their next dose. You do not want to run the risk of a zero or even low level because that is when antibody risk is the greatest. Patients will continue to metabolize the drug as time goes on so it is likely she could end up with 0 in her body at 6 weeks.

You have to be careful when looking at desirable levels. You have to know desirable at what point in time. Some studies will quote a level and then say 4 weeks post infusion or half life etc. I have read many studies, seen presentations and spoken with our GI at length about the subject and right now he said the popular consensus is 4-10 at the end of infusion.

My daughter has been all over the map with regard to dose and or interval. The risks do not increase with higher levels or shorter intervals. It is simply a matter of best disease control, QOL (ie: spreading out infusions as much as possible so as not to interrupt their lives...time off school, jobs etc), cost control (do they open a new vial and charge for med they won't be using) etc.

Good luck with the antibodies testing!

 

[Pilgrim]

Are you certain that risks do not increase with higher med levels? That doesn't make sense to me.

 

[Maya142]

We have heard different things from different doctors. M's GI/rheumatologist say med risks do not increase with higher doses but a rheumatologist my older daughter saw said they do and was VERY hesitant to increase my daughter's dose of Remicade.

However, she was an adult rheumatologist and we have since been told that kids, teens and young adults tolerate biologics much better than older adults and do well with higher doses.

 

[malorymug]

Increasing remicade was a godsend for my boy! Our GI is saying he'd like the remicade levels to be between 8-10. We increased for just 5 short months and now we are dropping back because his most recent levels were 32.

It is so wonderful that we can test the drug levels. It really helps tailor the drug to the individual patient.

 

[Mehita]

I think part of the beauty of Remicade is that you can play with the dose and schedule to meet your child's needs. DS was at 5mg/kg and 8 weeks for several years, but kept petering out around week six. When we tested him, he had zero Remi in him at 8 weeks, which explained a lot at the time. Now he's at 7.5mg/kg and six weeks and doing great. His last levels check was seven something and his GI wants kids between 5-10.

I do think, prior to upping his dose, he was regularly hitting 0 for quite awhile before we tested him and that is what led to him starting to form antibodies. I was a little upset with his GI not testing him sooner because I think we could have prevented it, but... not much I can do about it now.