On Remicade, still flaring

[Lori1973]

My 13 yr old son started Remicade in July 2013 and has since been scheduled for infusions every 8 weeks. However, each month, on the fifth week we have a flare with bloody/loose stools. Its almost like clockwork. UGH...The doctor is now wanting to run a specialized drug test to see if he is building up antibodies and/or if we just need to go to every 4 weeks or 6. He is also on 6MP. Hard for our son to stay positive. Can't wait to get in remission. We have been working at this for a year. Just do not want to go down the abscess road again. Any suggestions welcome.

 

[Clash]

That sounds about how it was going for my son. He did great during the loading doses and all of his symptoms went away, we were so thrilled to have our kid back. Then when the 8 week stretch started he could only make it 5 weeks before symptoms would start to creep back in.

We first upped the dose, then shortened the schedule then added methotrexate, he did awesome with this regimen. He then decided on his own to drop the MTX and at first it didn't seem to make a difference(so GI agreed with dropping MTX) but within 2 months he was back to making it only about 5 weeks without symptoms. We added MTX back in at a lower dose and he has been doing really well with no symptoms since then.

 

[sickofcrohns]

Same for me (and I've been on Remicade almost 10 years) -- by week 5, symptoms are back every time. It's hard to get coverage where I am for more frequent doses, but I'm down to 7 weeks now and it's helping. Talk to your son's GI. If the Remicade is working decently for weeks 1-4, maybe having it every 6 weeks instead of every 8 weeks would keep things manageable.

Good luck!

(Oh yeah, I was on methotrexate for 2 years while also having Remicade, and it did nothing for me other than plague me with annoying side effects. I know it works for some people, but for me it was useless).

 

[mothwillowweb]

I was on Remicade for NINE YEARS and NEVER went into remission

 

[Lori1973]

Thank you everyone...Visited with son's GI and he is scheduling him in for Remicade every 6 weeks now. Staying on the 6MP also. We also did the Premethieust (sp) test and will get the results in a week to determine if my son is building up antibodies to Remicade. Keep our fingers crossed that we are on the right track. We travel four hours for our infusions, but it is worth it because they do such a good job.