Starting infliximab

[CDJ]

Josh is still flaring despite taking steroids [ prednisolone ] for the past 6 weeks. We had thought he was doing better, but since he weaned down to 30mg his symptoms have all returned.

We have now been told that he will be starting infliximab after all tests are done beforehand. Then possibly methotraxate as well.

My question is how often will he have to have this? Will it be more often to start with then increasing the time scale? When are we likely to see positive results from this?

Sorry for all the questions, this is a new treatment for us and feel very in the dark about it at the moment.

 

[malorymug]

Hi, we just got the word that my son will be starting infliximab too. I have so many questions too. It was big news to hear for us.

Our doc is having the infusions done at 0, 2, 4 weeks and then ever 8 weeks. And I think this will continue until the drug stops being effective. Some folks on the Remicade forum have been on it for 10+ years. I hear some begin feeling better immediately while some need a few doses before seeing improvements.

There are a few of us on this board that are right where you are. Hang in there.

 

[Momtotwo]

My son rec'd them at 0, 2, 6 weeks and then every 8. The interval was then shortened to every 6.

 

[Mehita]

DS had loading doses at 0, 2, and 6 weeks. He has been on an 8 week cycle for over a year now and it's working really well for him. It may have been coincidental, but we saw improvement within hours of his first dose. He was inpatient at the time and they'd just started IV abx as well, but within 4 days he had normal labs. We hadn't seen normal labs forever!

Good luck to you both! It has been a life changer here and my son likes that he only has to think about his Crohn's for three hours every eight weeks.

 

[crohnsinct]

Hi and welcome to the IV League.

We had the same loading schedule as Mehita and then went to 8 weeks but my daughter couldn't make it that far. We have increased dose and shortened schedule all the way down to 4 weeks with 10.5 mg/kg and everything in between. She is now doing so well that we are back up to 7 weeks and at 7mg/kg. It is a rather flexible thing.

My daughter was on prednisone at the same time in the beginning and I think that has a lot to do with how quickly they get better (double whammy). However, she didn't really take off until about 6 months after she started.

Good Luck!

 

[Clash]

Same loading dose schedule as the rest then up to every 8 weeks. His symptoms went away after the first dose but once out to 8 weeks we had to do some adjustments as well yo keep thinks running smoothly. He ended up on high dose remicade every 6 weeks plus methotrexate.

Hope everyone thing goes well!

 

[Maya142]

We did the same loading dose - 0,2 and 6 weeks and then did every 6 weeks (my daughter never made it to 8 and her rheumatologist preferred every 6 weeks anyway). She saw an improvement after 2 infusions but only felt MUCH better after 4 infusions or so. We also did MTX - the shots, not the pills.

She is now on high dose Remicade every 4 weeks (20mg/kg). However, this is for the AS, not the IBD. She quite enjoys the infusions - it's a chance to relax and watch tv and miss school.

Good luck! I hope it's your son's miracle drug!

 

[my little penguin]

Ds did infusion at week 0, week 2 and then week 6 ( which is actually 4 weeks from the infusion at week 2 but 6 weeks from the week 0 infusions) these are the loading doses
Then you switch to maintence .
Ds never made 8 weeks
They raised him to 7.5mg/kg at every 6 weeks

 

[Sascot]

No experience with them. Just wanted to wish you luck, hope they work well!

 

[Jmrogers4]

Jack did 0, 2, 4 and 6 didn't make it to 8 weeks until about 8-9 months later with lots of dosage adjustment we've had 3 at 8 weeks now at max dosage 10ml/kg and he seems to be doing fine.
Hope it works wonders.

 

[kimmidwife]

Wishing you good luck! Hopefully it will be his magic!!!

 

[CDJ]

Thank you for all the positive replies on Infliximab. We just need to wait for all blood tests etc to be done before Josh starts this.
I am really hoping this works for him as he has been in one flare or another since August. He has been on steroids since November and each time we try weaning down the flare comes back. He really needs to start getting some relief from all of this. He has missed so much school since September and this is such an important year for him.

 

[Farmwife]

It has worked for Grace. I hope it works for him. HUGS

 

[araceli]

0, 2, 4, 6, and every 8weeks. 5mlg per kilo. Results after 4th dose. Make sure they do a TB test before first infusion. Wishing you good response to remicade.

 

[positivemum]

I really hope it works for him. I am wondering if that is the route we need to consider. Also in an important year - Year 11 - and the stress of it is causing huge issues. Good luck to you.

 

[Worried mama]

My son will be starting on this next week for the first time. Then 2 weeks, 4 weeks and then every 8 weeks. That's the plan anyway. Good luck!