Help need opinion pls

[Liza123]

Hi everyone
I have crohns and take remicade. I am 2 days from infusion and have been having stomach trouble every time I eat or walk around now it's all just mucus. I emailed my doc with no response. Has anyone else delt with this? Did they give u steroids? I'm already on the highest and closest remi dose I can be on.
Thanks in advance

 

[Clash]

The GI probably needs to run a levels test at the end of your schedule to see if there is remicade left in your system. Some people just metabolize it faster.

If you are on the closest schedule and highest dose and tests show undetectable remicade levels at the end of the cycle then the GI may want to switch up your meds.

Before surgery (my son built up antibodies to remicade due to having to stop the med for surgery) my son was on a 5-6 week schedule of high dose remicade 15mg/kg.

After surgery he was started back on remicade and had a reaction due to having stopped the med for surgery and recovery.

 

[Liza123]

Thank you clash
What sort of reaction? I have been getting fevers and flu like symptoms on and off

 

[Clash]

When he started back, while getting his second infusion, his chest got tight, he became a bit short of breath and was flushed. They stopped the infusion gave solumedrol and continued the I fusion with no issues.

So the 3rd infusion he was premeditated with solumedrol but the reaction occurred again so infusion was stopped. Antibody levels came back extremely high.

 

[Walt]

Good Day Liza,
Sorry to hear of your suffering.

We each must make our own choices.
I would take nothing more and play wait-&-see.
2 days is close enough to ride out the storm?
I am not saying it'd be easy or fun.
But adding other drugs clouds your picture.

If your next infusion causes your symptoms to back off,
one might consider that good-to-know?
Note it and bring it up next chance in the little room.

Also, watch for a pattern over time, if your Remi fades just before your next infusion?

hope you find some answers,
and some relief,
peace
w

ps
A trough test involves blood taken just before your next dose.

: D

 

[ronroush7]

Keep trying to contact your doctor until you get an answer. Let us know how you are.