Remicade- high dose

[CJMom]

My son has been on Remicade for almost two year, since his diagnosis. He was initially put on Remicade because he also had a perianal fistula. He also is on Methotrexate pills once a week. He also has been on Cipro a fe times because of the bad fistula. They increased his dose once. They just increased his dose again yesterday to 10 mg. He had an MRI two weeks ago and it showed the two fistuals he had are gone. So the Remicade has worked on the fistulas. The MRI did show active Crohns in the colon and anus, only in these areas ("only"). That is why they increased the Remicade to 10mg.

Any other kids out there on this high dose? Did they keep them on it for long? They are saying they will keep at this dose for a few cycles.

Really looking for some positive feedback. Feeling frustrated and upset that he is still struggling and in pain and fatigue.

 

[my little penguin]

10 mg every 4 weeks ?
Or 10 mg every 8 weeks ?
Neither are "high dose"
High is 20 mg every 4 weeks
Tagging maya142
Crohnsinct
Clash

10 mg every 4-5 weeks is pretty standard in kids
Hooe you get relief for him soon

 

[CJMom]

just moved to 10 mg every 6 weeks.

 

[Clash]

My son was on 12 mg every six weeks and then 15mg every 6 weeks. He was also on mtx by injection at the time The dose or schedule caused no issues. Remicade just wasn't his "miracle drug" though he did become asymptomatic while on it.

 

[malorymug]

We are at 10mg/kg every 4 weeks. Bumped up to that level because of peri anal abscesses and fistulas. He has just completed 4 cycles at that dose. He is having a repeat MRE and prometheus testing of drug levels to see if he can reduce the dose. My son feels great on this current Remicade regimen and I don't want it to change. He just reached 100 lbs!

 

[pdx]

Glad to hear that the fistulas are gone, CJMom, and I hope the higher dose will take care of the inflammation and pain.

Malorymug--100 pounds is awesome! Glad the higher dose is helping.

 

[crohnsinct]

O was on 12mg/kg every 5 weeks for about a year.

Risks don't increase with dosage. Higher doses or more frequent infusions do not mean more serious disease. It usually just means your body is sopping up the drug faster than usual. Metabolism as well as inflammation affects drug absorption sivas inflammation decreases they can usually decrease dose or spread out infusions

 

[Maya142]

My daughter went all the way up to 20mg/kg every 4 weeks. I was VERY worried about infections, but she was absolutely fine - no side effects at all.

"High dose Remicade" is not used at all hospitals - our GI did not use it, but our rheumatologist did. It was given to my daughter because her arthritis was totally out of control (her Crohn's was under control on 10 mg/kg every 4-5 weeks).

M stayed on high dose Remicade for quite a while and had no problems. The higher dose did help her joints, but not enough, so we eventually had to switch to another TNF inhibitor.

I hope your kiddo does better on the higher dose and starts feeling better soon.

 

[Jmrogers4]

We were at 10ml every 8 weeks but insurance wouldn't approve 10ml every 7 weeks but approved 7.5ml every 6 weeks which is what we're currently at and his GI is fighting it as we've had an increase in his numbers on labs. Unfortunately we basically have to wait for it not to work until we can bump up to most likely at this point 10ml every 6 weeks and then hopefully move out to every 7.