Remicade is it working

[Lizette]

Hi, Michael will go for his 3rd infusion Monday, so far we have not seen any changes, he still goes to the bathroom a lot. Sometimes mushy, watery or solid stool but he has to run, his appetite has gotten better, his energy is much better than the summer when he had anemia, his hemoglobin is still low at 12.5 getting there, his c reactive is way high 24 compare to 17 he had before starting remicade. His dr said some bodies react different to the medication, which I completely understand, he said because his crohns is in the colon it takes more time, how much time? When I read hear and they say they have developed antibodies, is that because they had a reaction at the the of infusion? I'm in another forum in fb for fistulizing perianal crohns. And the kids there they are doing great with 1st infusion . Any advice on what to ask or do..
Lizette

 

[malorymug]

Some kids respond quickly to remicade and some not. I think it took my boy about 4 months to see lab changes. His fatigue was a gradual improvement as well.

As far as antibodies, my kiddo never had a reaction to remicade but developed antibodies that we discovered a year into Remicade. The doc increased his dose and was able to get rid of the antibodies.

Hopefully you will continue to see some big improvements soon. Crohn's definitely tests our patience.

 

[my little penguin]

We thought remicade wasn't working for ds
He had his 3rd infusion still exhausted puking rectal prolapse etc...
Then within 2-3 weeks after his third infusion
We realized he was actually better
It was gradual so we didn't see it right away
But he had more energy stopped vomiting etc....
He did have a reaction after 8 months but no antibodies were found

Normally a gut takes 6-9 weeks to heal which is why they do een or pred for 6-9 weeks
Your not at 6 weeks even yet

He didn't get this way over night so it will take time
For some months not days or weeks
Not what you wanted to hear but definitely a reality and some need immunosuppressants added to the biologics to boost it

Everyone wants their kid to be well as quick as possible

 

[Maya142]

It can definitely take time. It was very slow for us too. By the 3rd or 4th infusions we noticed a change, but it took a couple months after that before she really felt GOOD.

We also had to tweak the dose - increased it to 7.5 mg/kg and then 10 mg/kg and the frequency (every 5 weeks or so).

Hang in there.

 

[pdx]

My daughter also took a long time to respond to Remicade. She actually was getting sicker during the first 2 months after she started Remicade, so we had to add a lot of other treatments (EEN, methotrexate, and steroids), along with increasing her Remicade dose twice, before she finally started getting better. Six months after starting Remicade, she was finally doing well and was able to drop the steroids and EEN.

If your doctor tests Remicade levels before one of your son's infusions, it can help you figure out if a dose increase is needed. Good luck--hope he starts responding soon.

 

[sickmom]

I can relate. My girl did one infusion, was great for a week (apetite, solid poop, no blood, no pain) and then got bad again. She had the second infusion and got worse than ever (rectal bleeding with clots, severe anemia, pain, terrible labs) and is now on tpn, solumedrol, four antibiotics and her usual treatment.
I feared it wasn't working but I read this happens sometimes and we should wait.

 

[Farmwife]

I'm sure this isn't what you want to hear but it took almost a whole year to see a big change in grace.
We were thinking about changing drugs and it got better!
I hope it start working soon!