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Treatment not working???

Hey guys! Hope everyone is doing well!! It’s been a few months since we posted. Our son started the Remicade loading phase in he middle of December.Got his 2nd dose at the end of December and his last at the end of January. Just took him back for his 8 week infusion last Friday and just got some of the bloodwork back.. His Sed rate went from 9 to 21 and this was his Remicade levels we got back:
Infliximab level: <0.8 mcg/ml.
Infliximab ADA: 58 AU( this was flagged high)
Is this normal for just starting or from y’all’s experience does it look like he is rejecting it? Not sure if this matters, but he had to take an antibiotic for 10 days for sinus infection and was on day 9 when we went for infusion....

my little penguin

Staff member
The ada number is drug antibodies against remicade
Meaning his body is fighting the drug
The other number means he has next to no remicade left in his system at 8 weeks
Which would explain the body fighting the drug

your child Gi will talk to you
Some add extra meds to help
Others increase frequency (every 4 or every 6 weeks ) or increase dose amount or all three
My daughter had that exact situation 5 years ago--low infliximab levels and positive antibodies. If the antibodies are too high, it can mean that you have to stop remicade. But in my daughter's case, her doctor increased her remicade dose and added methotrexate and the antibody levels dropped back to zero, and have remained at zero for the last 5 years. It's really common to need remicade dose adjustments in the first year, and it's rare for a kid to be able to go 8 weeks between infusions. I don't think the sinus infection would have any effect on the levels, but it might have caused the increase in sed rate.
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My daughter was on combo treatment (remicade + methotrexate) for the first year after diagnosis, and then her doctor had us try stopping the methotrexate. After about 6 months, she was in a flare, and that was when her remicade levels came back low, and with antibodies. We added methotrexate back at that point, along with an increase in remicade dose, and her flare ended (and the antibodies disappeared). We've stuck with the combo treatment since then. Some kids get by just with an increase in remicade levels, but we figure why mess with something that is working for her. Something else in my daughter's case was that she developed Remicade-induced psoriasis when we stopped the methotrexate, and that went away once she was back on it.
We just got a voicemail from the doctors office. Our doctor is out, so another doctor looked at his labs and said that we will have to find a new medicine, that his body is rejecting the Remicade. Does this mean he will reject all biologics?


my little penguin

Staff member
Odds are in your favor that he will be ok with the next biologic
Remicade is murine protein (mouse) based
It has a higher risk of producing antibodies
Humira is humanized lower risk
Ds had an allergic reaction to remicade -basically his body really fought the drug
He was perfectly fine on humira for over 5 years
And now on Stelara for the past almost 4 years

so there is hope
Add in Ds is very allergic to everything -multiple drugs , life threatening food allergies and regular pollen /bee allergies
But Ds was still ok on the other biologics after remicade

good luck
Thanks for positive info!! Our son also has some allergies as well. ( nuts, eggs, pollen and a few others). Hopefully he will have the same results as your son!! We really appreciate you always responding back!!! Hope all is well with y’all!!
Thanks again!!

my little penguin

Staff member
My humira program will send you one for free
Then you just call or click online and they will send a mail safe return box to return any full containers plus send you a fresh empty as often as you need

most places otherwise will not take your full sharps container
This way the needles get incinerated and you don’t have it stuck at your house
Containers fill up fast when it’s every 2 weeks
Wishing your son all the best with humira. It has been a life changer for my daughter right from the first treatment, the difference after the first couple of injections was very effective. Humira put her in remission and has kept her that way for over three years.
My little penguin- We will definitely check on the sharp program once we get the approval from insurance!! Thanks for info!!
Lizzyg- thanks for well wishes and glad your daughter is doing great!!! Hopefully, we will have the same results!!