Rejected Remicade - Now Humira & Methotrexate?

[BoyMom#32]

My son had a severe reaction to his 4th infusion of Remicade (The third one we stopped after 30 minutes because he started shaking and running a fever - the labs came back ok so they wanted to "try" again) The 4th infusion he got less than 1ml & a code blue was called. His antibodies came back at over 22,789!
They suggested switching to Humira so we went in yesterday for the initial 4 injections - his Dr. suggests adding methotrexate to the humira taking one pill per week along with the humira injection. To hopefully prevent him building up antibodies to the Humira?
It makes me extremely uneasy and nervous about combining the two mediciations due to the increased risks associated with combining them.

Has anyone else had a teenager that had a similar experience? Any suggestions, advice?

Thanks,

14YO - diagnosed in Jan. 2013 - First started 4 pills per day of Lialda - no response, switched to Remicade - severe Anaphylaxis, Humira started yesterday.

 

[my little penguin]

Yep Ds was 9 when he reacted to remicade
Switched to humira and later humira plus Mtx
That was 3.5 years ago
No allergic issues from humira
Other drugs ( contrast dyes and foods ) but nit humira

Good luck

 

[my little penguin]

Risk of combo is way lower than everyday risk
Risk of death at 14 or less
By car 1 in 250
Drowning 1 in 1000

T cell lymphoma without any meds or Ibd 2 in 10000
Woth Ibd biologics and immunosuppressants 6 in 10000

Cars are riskier and kids ride in them everyday

 

[Clash]

My son developed antibodies to remicade after having to stop and start back for surgery. His level was in the 20,000+ too. He had already been on mtx with remicade.

He was moved to humira plus mtx. The GIS sometimes stop the immunosuppressants like mtx or 6mp after several months when using with a biologic. Not an option for us since mtx treats his other dx.

He's had no issues with mtx. His in injection form and he takes it the day before his humira shot.

 

[Maya142]

Both my girls have been on Humira and Methotrexate. They didn't have reactions to Remicade, but it did stop working for both of them.

Both girls say that the Humira shot hurts but they got used to it. It's the actual medication that burns and not just the needle. We use ice and had them do the shot while watching TV. I have heard the syringe is better than the pen because you can control the rate of the injection but we haven't actually tried that yet.

Some parents on here (my little penguin) have added Lidocaine to the Humira to make it less painful.

The MTX shot is no big deal at all. It's a tiny needle and not very painful. Some GIs use MTX just for 6 months to a year or so and then discontinue it. Ours continues to use MTX while kids are on anti-TNFs to prevent building antibodies.

My younger daughter had trouble tolerating MTX but MOST kids have no issues at all with it. It can cause nausea so is typically given on a weekend, so the kiddo has a day to recover. It can be given as a shot or pills. My older daughter is still on MTX and only has mild nausea with it - no issues really. Zofran can be given to help with nausea and Folic acid helps prevent side effects.

Here is a good presentation about the risks and benefits of various IBD medications: http://programs.rmei.com/CCFA139VL/

We worried a lot before put our girls on these drugs, but honestly, once you do, you never look back. MTX worked very well for both of them. At some point the disease became scarier than the medications to us.

Good luck with whatever you choose!

 

[CrohnsKidMom]

My son is on Remi with oral MTX, and has no side effects from the MTX. Prior to Remi he was on MTX injections as a monotherapy. He did have a lot of nausea with the higher dose injection. No issues with the oral, lower dose. And no antibodies to the Remi either!